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The Long Way Up


Lourdes Segade

The Long Way Up explores the lives of children with Achondroplasia and of their families along the process of enlarging limbs, a difficult path that takes at least four years. This is a story about human beings, about their suffer, their strength, resilience, acceptance, joy, adaptation; a story about frustration, about being parents, about childhood and about all the emotions and key moments that are part of this tough process. This selection of images ONLY shows moments of these children and their families while in hospital or at the doctor's office. For most of the people, growing up is a matter of time. The greatest change happens during adolescence, when changes in both body and mind become a pain in the ass for kids and for their parents. For children with Achondroplasia ‘growing up’ is, over all, something literal if they decide to undergo multiple surgical procedures that add centimeters to their height, given that Achondroplasia is the most common dwarfism and the average height of an adult is 131 centimeters. For them is it worth it to spend part of childhood and the teenage sitting on a wheel chair because the result is a much better quality of life. Achondroplasia is a rare genetic condition that causes the ossification of the cartilage, leading to, among other things, short limbs. If one parent has the condition, their children have a 50% chance of inheriting it (75% if both parents have it). That said, most cases of Achondroplasia appear as spontaneous mutations in families where neither parent has the condition.


 

Lourdes Segade / Picturetank SEL0456286

Lorena (15) and her mom, Juani, await the ambulance that will drive them back home, in Yecla (Murcia). They travel to Barcelona every now and then because Dr. Ignacio Ginebreda and his team have been treating Lorena since she was a little girl. For some years now she has been in the limb lengthening process. She is now having the thighbones stretched by the monolateral external fixators. The trips and the whole treatment are paid by the public health system...The complete limb lengthening practiced by Dr. Ginebreda and his team consists on three surgical procedures (in some cases they need more than three) that the child undergoes in a time lapse of three to five years. They can stretch shinbones, thighbones and the humerus. .During surgery the doctors break the bone and fix it to a monolateral external fixator. The fixator has a scale with millimeters and the child must turn a key 1 mm per day until the prescribed length is achieved. As the child adds millimeters to the scale in the fixator, their bones stretch while they heal. Not every child’s bones can stretch to the maximum. It will depend on their age, on their tissues (mainly the muscle) and on some other things. The maximum length given to the thighbones and the shinbones with this procedure is 15 cm. The humerus generally needs no more than 10-12 cm, depending on the length of the forearm..When the lengthening process is over, the child still must wear the fixators until the bone is strengthened. Afterwards, the limbs will be put in plaster cast as they finish up with the consolidation process. Much time in rehabilitation will still be ahead.

Barcelona - 00/00/0000

 

Lourdes Segade / Picturetank SEL0456385

Lorena (31) is nervous as her son Adrián (6) is going to be visited by Dr. Ignacio Ginebreda for the first time. They have traveled from the Canary Islands to Barcelona, where Dr. Ginebreda and his team perform a surgical procedure that allows children with Achondroplasia (the most common type of dwarfism) to grow up to 30 cm and to add 6 to 10 cm in their arms. Lorena first heard about the limb lengthening when it was too late for her and she is now determined to give her son the opportunity of having a better life at whatever cost. The process usually begins when kids are 10 or 11 yo..The complete limb lengthening practiced by Dr. Ginebreda and his team consists on three surgical procedures (in some cases they need more than three) that the child undergoes in a time lapse of three to five years. They can stretch shinbones, thighbones and the humerus. .During surgery the doctors break the bone and fix it to a monolateral external fixator. The fixator has a scale with millimeters and the child must turn a key 1 mm per day until the prescribed length is achieved. As the child adds millimeters to the scale in the fixator, their bones stretch while they heal. Not every child’s bones can stretch to the maximum. It will depend on their age, on their tissues (mainly the muscle) and on some other things. The maximum length given to the thighbones and the shinbones with this procedure is 15 cm. The humerus generally needs no more than 10-12 cm, depending on the length of the forearm..When the lengthening process is over, the child still must wear the fixators until the bone is strengthened. Afterwards, the limbs will be put in plaster cast as they finish up with the consolidation process. Much time in rehabilitation will still be ahead..

Barcelona - 00/00/0000

 

Lourdes Segade / Picturetank SEL0456369

María (15) talks on the phone after a visit to the doctor while her dad has lunch in the hotel they are staying at in Barcelona. The plaster cast of her legs (which covered from ankle to groin) has been removed in the morning, and she now can see her legs without plaster cast or the monolateral external fixators that have added 30 cm to them. After one year and a half she feels light again..They have traveled from the Canary Islands, where they live, because in Barcelona Dr. Ginebreda and his team perform a surgical procedure that allows children with Achondroplasia (the most common type of dwarfism) to grow up to 30 cm and to add 6 to 10 cm in their arms. .The complete limb lengthening practiced by Dr. Ginebreda and his team consists on three surgical procedures (in some cases they need more than three) that the child undergoes in a time lapse of three to five years. They can stretch shinbones, thighbones and the humerus. .During surgery the doctors break the bone and fix it to a monolateral external fixator. The fixator has a scale with millimeters and the child must turn a key 1 mm per day until the prescribed length is achieved. As the child adds millimeters to the scale in the fixator, their bones stretch while they heal. Not every child’s bones can stretch to the maximum. It will depend on their age, on their tissues (mainly the muscle) and on some other things. The maximum length given to the thighbones and the shinbones with this procedure is 15 cm. The humerus generally needs no more than 10-12 cm, depending on the length of the forearm..When the lengthening process is over, the child still must wear the fixators until the bone is strengthened. Afterwards, the limbs will be put in plaster cast as they finish up with the consolidation process. Much time in rehabilitation will still be ahead.

Barcelona - 00/00/0000

 

Lourdes Segade / Picturetank SEL0456380

Sitting in her wheel chair, Lorena (16) cries for her friends do not want to change their plans in order to include her in the celebration of her best friend birthday party. It is hard to be a normal teenager and it is even harder if you are achondroplasic and you have to stay at home for four months without going to high school nor doing any other activity. For some years now Lorena has been in the limb lengthening process. She is now having the thighbones stretched by monolateral external fixators. Lorena's bigger body and the fact that her father leaves very early for work does not allow her mom to take her to the high school nor to go out often and that's why only on weekends she can go out. She has spent three months in bed and she has been having some teachers giving her classes at home. Lorena's family moved to a house (owned by them) close to the one where they used to live because the chair was too big for the doors. However, in this house Lorena's room was too small and they put the bed in the living-room. Lorena's father has built an structure with an engine in order to load and move Lorena when she needs to be washed or when she needs to urinate...The complete limb lengthening practiced by Dr. Ginebreda and his team in Barcelona consists on three main surgical procedures (in some cases they need more than three) that the child undergoes in a time lapse of three to five years. They can stretch shinbones, thighbones and the humerus. .During surgery the doctors break the bone and fix it to a monolateral external fixator. The fixator has a scale with millimeters and the child must turn a key 1 mm per day until the prescribed length is achieved. As the child adds millimeters to the scale in the fixator, their bones stretch while they heal. Not every child’s bones can stretch to the maximum. It will depend on their age, on their tissues (mainly the muscle) and on some other things. The maximum length given to the thighbones and the shinbones with this procedu

00/00/0000

 

Lourdes Segade / Picturetank SEL0456334

Sergi (9) awaits his turn to go into Dr. Ignacio Ginebreda's office on the day previous to his first surgery. Sergi is starting the limb lengthening process at the same time that he has his shinbones curvature corrected. He still cannot imagine what's ahead. His height is now 99.5 cm...The complete limb lengthening practiced by Dr. Ginebreda and his team in Barcelona consists on three main surgical procedures (in some cases they need more than three) that the child undergoes in a time lapse of three to five years. They can stretch shinbones, thighbones and the humerus. .During surgery the doctors break the bone and fix it to a monolateral external fixator. The fixator has a scale with millimeters and the child must turn a key 1 mm per day until the prescribed length is achieved. As the child adds millimeters to the scale in the fixator, their bones stretch while they heal. Not every child’s bones can stretch to the maximum. It will depend on their age, on their tissues (mainly the muscle) and on some other things. The maximum length given to the thighbones and the shinbones with this procedure is 15 cm. The humerus generally needs no more than 10-12 cm, depending on the length of the forearm..When the lengthening process is over, the child still must wear the fixators until the bone is strengthened. Afterwards, the limbs will be put in plaster cast as they finish up with the consolidation process. Much time in rehabilitation will still be ahead.

Barcelona - 00/00/0000

 

Lourdes Segade / Picturetank SEL0456373

Adrián (right) and his mom Lorena (in light camel jacket) inside the subway in Barcelona, where Adrián is going to be visited by Dr. Ignacio Ginebreda for the second time. They have traveled from the Canary Islands, where they live, because in Barcelona Dr. Ginebreda and his team perform a surgical procedure that allows children with Achondroplasia (the most common type of dwarfism) to grow up to 30 cm and to add 6 to 10 cm in their arms. Lorena first heard about the limb lengthening when it was too late for her and she is now determined to give her son the opportunity of having a better life at whatever cost. The process usually begins when kids are 10 or 11 yo..The complete limb lengthening practiced by Dr. Ginebreda and his team consists on three surgical procedures (in some cases they need more than three) that the child undergoes in a time lapse of three to five years. They can stretch shinbones, thighbones and the humerus. .During surgery the doctors break the bone and fix it to a monolateral external fixator. The fixator has a scale with millimeters and the child must turn a key 1 mm per day until the prescribed length is achieved. As the child adds millimeters to the scale in the fixator, their bones stretch while they heal. Not every child’s bones can stretch to the maximum. It will depend on their age, on their tissues (mainly the muscle) and on some other things. The maximum length given to the thighbones and the shinbones with this procedure is 15 cm. The humerus generally needs no more than 10-12 cm, depending on the length of the forearm..When the lengthening process is over, the child still must wear the fixators until the bone is strengthened. Afterwards, the limbs will be put in plaster cast as they finish up with the consolidation process. Much time in rehabilitation will still be ahead.

Barcelona - 00/00/0000

 

Lourdes Segade / Picturetank SEL0456287

Eva cries when she sees her son Sergi (9) suffering as nurse Alicia cleans and cures the wounds around the monolateral external fixators for the second time since Sergi underwent surgery –the day before. At the beginning of the process, when kids are discarded from hospital, parents are usually the ones who cure the wounds (because it is very painful for the patient on the first month). Little by little the patient will lose the fear and will start doing it by himself...The complete limb lengthening practiced by Dr. Ginebreda and his team in Barcelona consists on three main surgical procedures (in some cases they need more than three) that the child undergoes in a time lapse of three to five years. They can stretch shinbones, thighbones and the humerus. .During surgery the doctors break the bone and fix it to a monolateral external fixator. The fixator has a scale with millimeters and the child must turn a key 1 mm per day until the prescribed length is achieved. As the child adds millimeters to the scale in the fixator, their bones stretch while they heal. Not every child’s bones can stretch to the maximum. It will depend on their age, on their tissues (mainly the muscle) and on some other things. The maximum length given to the thighbones and the shinbones with this procedure is 15 cm. The humerus generally needs no more than 10-12 cm, depending on the length of the forearm..When the lengthening process is over, the child still must wear the fixators until the bone is strengthened. Afterwards, the limbs will be put in plaster cast as they finish up with the consolidation process. Much time in rehabilitation will still be ahead.

Barcelona - 00/00/0000

 

Lourdes Segade / Picturetank SEL0456308

Adrián (6) is prepared for X-rays of his back and his legs. He is going to be visited by Dr. Ignacio Ginebreda for the first time. He and his mother, Lorena, have traveled from the Canary Islands to Barcelona, where Dr. Ginebreda and his team perform a surgical procedure that allows children with Achondroplasia (the most common type of dwarfism) to grow up to 30 cm and to add 6 to 10 cm in their arms. Lorena first heard about the limb lengthening when it was too late for her and she is now determined to give her son the opportunity of having a better life at whatever cost. The process usually begins when kids are 10 or 11 yo..The complete limb lengthening practiced by Dr. Ginebreda and his team consists on three surgical procedures (in some cases they need more than three) that the child undergoes in a time lapse of three to five years. They can stretch shinbones, thighbones and the humerus. .During surgery the doctors break the bone and fix it to a monolateral external fixator. The fixator has a scale with millimeters and the child must turn a key 1 mm per day until the prescribed length is achieved. As the child adds millimeters to the scale in the fixator, their bones stretch while they heal. Not every child’s bones can stretch to the maximum. It will depend on their age, on their tissues (mainly the muscle) and on some other things. The maximum length given to the thighbones and the shinbones with this procedure is 15 cm. The humerus generally needs no more than 10-12 cm, depending on the length of the forearm..When the lengthening process is over, the child still must wear the fixators until the bone is strengthened. Afterwards, the limbs will be put in plaster cast as they finish up with the consolidation process. Much time in rehabilitation will still be ahead.

Barcelona - 00/00/0000

 

Lourdes Segade / Picturetank SEL0456384

María (15) makes an effort in order to go up the last flight before getting home, under the sight of her mother and her younger brother. Esther, her mother, used to help her all the way up but she now wants her daughter to start trying harder by her own. Maria has been sitting on a wheel chair for more than one and a half year and she now can walk with the help of a walker. She has undergone several surgical procedures in order to have her legs lengthened and thanks to that she has gained 30 cm. Now her height is 143 cm. In 2013 she will have the procedure practiced on her arms. Since she started the process of limb lengthening she has been living at her grandmother's while her parents and brother stayed at home. The flat is too narrow for a wheel chair and one has to go two stories up without elevator. Now that she can walk again, Maria spends the weekends at home.The complete limb lengthening practiced by Dr. Ginebreda and his team in Barcelona consists on three main surgical procedures (in some cases they need more than three) that the child undergoes in a time lapse of three to five years. They can stretch shinbones, thighbones and the humerus. During surgery the doctors break the bone and fix it to a monolateral external fixator. The fixator has a scale with millimeters and the child must turn a key 1 mm per day until the prescribed length is achieved. As the child adds millimeters to the scale in the fixator, their bones stretch while they heal. Not every child’s bones can stretch to the maximum. It will depend on their age, on their tissues (mainly the muscle) and on some other things. The maximum length given to the thighbones and the shinbones with this procedure is 15 cm. The humerus generally needs no more than 10-12 cm, depending on the length of the forearm.When the lengthening process is over, the child still must wear the fixators until the bone is strengthened. Afterwards, the limbs will be put in plaster cast as they finish up with the consolidatio

Las Palmas de Gran Canaria, Canary Islands - 00/00/0000

 

Lourdes Segade / Picturetank SEL0456449

Four days after surgery and right after being discharged from hospital, Sergi looks at the car wondering how his parents will make it to put him inside comfortly and without hurting his legs. This will be the first one of the many new routines and difficulties they will find in the long process of the limb lenthening...The complete limb lengthening practiced by Dr. Ginebreda and his team in Barcelona consists on three main surgical procedures (in some cases they need more than three) that the child undergoes in a time lapse of three to five years. They can stretch shinbones, thighbones and the humerus. .During surgery the doctors break the bone and fix it to a monolateral external fixator. The fixator has a scale with millimeters and the child must turn a key 1 mm per day until the prescribed length is achieved. As the child adds millimeters to the scale in the fixator, their bones stretch while they heal. Not every child’s bones can stretch to the maximum. It will depend on their age, on their tissues (mainly the muscle) and on some other things. The maximum length given to the thighbones and the shinbones with this procedure is 15 cm. The humerus generally needs no more than 10-12 cm, depending on the length of the forearm..When the lengthening process is over, the child still must wear the fixators until the bone is strengthened. Afterwards, the limbs will be put in plaster cast as they finish up with the consolidation process. Much time in rehabilitation will still be ahead.

Barcelona - 00/00/0000

 

Lourdes Segade / Picturetank SEL0456372

Sergi (right) awaits instructions from his teacher in order to enter the class-room. He always enters in first place since he's on a wheel-chair. .Sergi has Achondroplasia, a rare genetic condition that leads to short limbs, a prominent forehead and some other specific physical features, as well as health problems in some cases.Sergi underwent his first surgery in september 2011. Almost one year after surgery he will be able to see his legs free of fixators, plasters or prosthesis. The shinbone lengthening will add 12.2 centimeters. He will after need to learn how to use both legs and feet properly again.He still has some three years –at least– of lengthening ahead. Doctors will add up to 15 centimeters to his thighbones and up to 10 to the humerus. The surgical procedures will provide him with a much better life quality.

Porqueres, Girona - 00/00/0000

 

Lourdes Segade / Picturetank SEL0456329

Sergi turns the key of the monolateral external fixator that will add half a millimeter on his left shinbone. He has been performing the same action for some months now and he will have added, at the end of the process, 12.2 cm on each leg. At the beginning of the process, parents are usually the ones who turn the key twice a day and who cure the wounds (because it is very painful the first month). Little by little the patient loses the fear and starts doing it by himself...The complete limb lengthening practiced by Dr. Ginebreda and his team in Barcelona consists on three main surgical procedures (in some cases they need more than three) that the child undergoes in a time lapse of three to five years. They can stretch shinbones, thighbones and the humerus. .During surgery the doctors break the bone and fix it to a monolateral external fixator. The fixator has a scale with millimeters and the child must turn a key 1 mm per day until the prescribed length is achieved. As the child adds millimeters to the scale in the fixator, their bones stretch while they heal. Not every child’s bones can stretch to the maximum. It will depend on their age, on their tissues (mainly the muscle) and on some other things. The maximum length given to the thighbones and the shinbones with this procedure is 15 cm. The humerus generally needs no more than 10-12 cm, depending on the length of the forearm..When the lengthening process is over, the child still must wear the fixators until the bone is strengthened. Afterwards, the limbs will be put in plaster cast as they finish up with the consolidation process. Much time in rehabilitation will still be ahead.

Banyoles, Girona - 00/00/0000

 

Lourdes Segade / Picturetank SEL0456349

María (15) tries to reach the upper kitchen closets as she discovers, for the first time, that she is able to open them. She has been sitting on a wheel chair for more than one and a half year and she now can walk with the help of a walker. María has undergone several surgical procedures in order to have her legs lengthened and thanks to that she has gained 30 cm and now her height is 143 cm. In 2013 she will have the procedure practiced on her arms. Since she started the process of limb lengthening she has been living at her grandmother's while her parents and brother stayed at home. The flat is too narrow for a wheel chair and one has to go two stories up without elevator. Now that she can walk again, Maria spends the weekends at home...The complete limb lengthening practiced by Dr. Ginebreda and his team in Barcelona consists on three main surgical procedures (in some cases they need more than three) that the child undergoes in a time lapse of three to five years. They can stretch shinbones, thighbones and the humerus. .During surgery the doctors break the bone and fix it to a monolateral external fixator. The fixator has a scale with millimeters and the child must turn a key 1 mm per day until the prescribed length is achieved. As the child adds millimeters to the scale in the fixator, their bones stretch while they heal. Not every child’s bones can stretch to the maximum. It will depend on their age, on their tissues (mainly the muscle) and on some other things. The maximum length given to the thighbones and the shinbones with this procedure is 15 cm. The humerus generally needs no more than 10-12 cm, depending on the length of the forearm..When the lengthening process is over, the child still must wear the fixators until the bone is strengthened. Afterwards, the limbs will be put in plaster cast as they finish up with the consolidation process. Much time in rehabilitation will still be ahead.

Las Palmas de Gran Canaria, Gran Canaria (Canary Islands) - 00/00/0000

 

Lourdes Segade / Picturetank SEL0456354

Lorena's mom Juani and a nurse who attends three times a week cure her wounds while she still tries to keep sleeping, early in the morning, at their home in Yecla (Murcia). They travel to Barcelona every now and then because Dr. Ignacio Ginebreda and his team have been treating Lorena since she was a little girl. For some years now she has been in the limb lengthening process. She is now having the thighbones stretched by the monolateral external fixators. Lorena's bigger body and the fact that her father leaves very early for work does not allow her mom to take her to the high school. She has spent three months in bed and she has been having some teachers giving her classes at home. Lorena's family moved to a house (owned by them) close to the one where they used to live because the chair was too big for the doors. However, in this house Lorena's room was too small and they put the bed in the living-room. Lorena's father has built an structure with an engine in order to load and move Lorena when she needs to be washed or when she need to urinate...The complete limb lengthening practiced by Dr. Ginebreda and his team consists on three surgical procedures (in some cases they need more than three) that the child undergoes in a time lapse of three to five years. They can stretch shinbones, thighbones and the humerus. .During surgery the doctors break the bone and fix it to a monolateral external fixator. The fixator has a scale with millimeters and the child must turn a key 1 mm per day until the prescribed length is achieved. As the child adds millimeters to the scale in the fixator, their bones stretch while they heal. Not every child’s bones can stretch to the maximum. It will depend on their age, on their tissues (mainly the muscle) and on some other things. The maximum length given to the thighbones and the shinbones with this procedure is 15 cm. The humerus generally needs no more than 10-12 cm, depending on the length of the forearm..When the lengthening proces

Yecla, Murcia - 00/00/0000

 

Lourdes Segade / Picturetank SEL0456342

Lorena's feet while she's in bed being prepared to be loaded by the homemade crane that her father has built for her. For some years now she has been in the limb lengthening process. She is now having the thighbones stretched by the monolateral external fixators. Lorena's bigger body and the fact that her father leaves very early for work does not allow her mom to take her to the high school nor to go out often and that's why only on weekends she can go out. She has spent three months in bed and she has been having some teachers giving her classes at home. Lorena's family moved to a house (owned by them) close to the one where they used to live because the chair was too big for the doors. However, in this house Lorena's room was too small and they put the bed in the living-room. Lorena's father has built an structure with an engine in order to load and move Lorena when she needs to be washed or when she needs to urinate. ..The complete limb lengthening practiced by Dr. Ginebreda and his team consists on three surgical procedures (in some cases they need more than three) that the child undergoes in a time lapse of three to five years. They can stretch shinbones, thighbones and the humerus. .During surgery the doctors break the bone and fix it to a monolateral external fixator. The fixator has a scale with millimeters and the child must turn a key 1 mm per day until the prescribed length is achieved. As the child adds millimeters to the scale in the fixator, their bones stretch while they heal. Not every child’s bones can stretch to the maximum. It will depend on their age, on their tissues (mainly the muscle) and on some other things. The maximum length given to the thighbones and the shinbones with this procedure is 15 cm. The humerus generally needs no more than 10-12 cm, depending on the length of the forearm..When the lengthening process is over, the child still must wear the fixators until the bone is strengthened. Afterwards, the limbs will be put in plaster

Yecla, Murcia - 00/00/0000

 

Lourdes Segade / Picturetank SEL0456446

Sergi cries after being told that he needs to have a small nail removed from his ankle..He has monolateral external fixators in his legs in order to add 12.2 cm on each shinbone. It is the beginning of the process, that will lead him to add around 30 centimeters to his legs and around 10 to his arms. The whole limb lengthening takes at least four years.The limb lengthening practiced by Dr. Ginebreda and his team in Barcelona consists on three main surgical procedures (in some cases they need more than three) that the child undergoes in a time lapse of three to five years. They can stretch shinbones, thighbones and the humerus. During surgery the doctors break the bone and fix it to a monolateral external fixator. The fixator has a scale with millimeters and the child must turn a key 1 mm per day until the prescribed length is achieved. As the child adds millimeters to the scale in the fixator, their bones stretch while they heal. Not every child’s bones can stretch to the maximum. It will depend on their age, on their tissues (mainly the muscle) and on some other things. The maximum length given to the thighbones and the shinbones with this procedure is 15 cm. The humerus generally needs no more than 10-12 cm, depending on the length of the forearm.When the lengthening process is over, the child still must wear the fixators until the bone is strengthened. Afterwards, the limbs will be put in plaster cast as they finish up with the consolidation process. Much time in rehabilitation will still be ahead.

Barcelona - 00/00/0000

 

Lourdes Segade / Picturetank SEL0456396

Adrian (10) rehearses his First Comunion religious celebration with some of the kids that will take part in it too. Even though they are all the same age, Adrian is shorter due his condition. He has Achondroplasia, the most common type of dwarfism..He and his mother, Lorena, have been traveling from the Canary Islands to Barcelona since the boy was 7. There, Dr. Ginebreda and his team perform a surgical procedure that allows children with Achondroplasia to grow up to 30 cm and to add 6 to 10 cm in their arms. Lorena first heard about the limb lengthening when it was too late for her and she is now determined to give her son the opportunity of having a better life at whatever cost. The process usually begins when kids are 10 or 11 yo.The complete limb lengthening practiced by Dr. Ginebreda and his team consists on three surgical procedures (in some cases they need more than three) that the child undergoes in a time lapse of three to five years. They can stretch shinbones, thighbones and the humerus. During surgery the doctors break the bone and fix it to a monolateral external fixator. The fixator has a scale with millimeters and the child must turn a key 1 mm per day until the prescribed length is achieved. As the child adds millimeters to the scale in the fixator, their bones stretch while they heal. Not every child’s bones can stretch to the maximum. It will depend on their age, on their tissues (mainly the muscle) and on some other things. The maximum length given to the thighbones and the shinbones with this procedure is 15 cm. The humerus generally needs no more than 10-12 cm, depending on the length of the forearm.When the lengthening process is over, the child still must wear the fixators until the bone is strengthened. Afterwards, the limbs will be put in plaster cast as they finish up with the consolidation process. Much time in rehabilitation will still be ahead.

Jinamar, Gran Canaria - 00/00/0000

 

Lourdes Segade / Picturetank SEL0456324

María (13) is washed by her mom while sitting on her wheel chair, where she will be more than one and a half year. She 'wears' monolateral external fixators in her legs that have added 30 cm to her height and that prevent her from walking, standing up or doing anything by herself. ..The complete limb lengthening practiced by Dr. Ginebreda and his team consists on three surgical procedures (in some cases they need more than three) that the child undergoes in a time lapse of three to five years. They can stretch shinbones, thighbones and the humerus. .During surgery the doctors break the bone and fix it to a monolateral external fixator. The fixator has a scale with millimeters and the child must turn a key 1 mm per day until the prescribed length is achieved. As the child adds millimeters to the scale in the fixator, their bones stretch while they heal. Not every child’s bones can stretch to the maximum. It will depend on their age, on their tissues (mainly the muscle) and on some other things. The maximum length given to the thighbones and the shinbones with this procedure is 15 cm. The humerus generally needs no more than 10-12 cm, depending on the length of the forearm..When the lengthening process is over, the child still must wear the fixators until the bone is strengthened. Afterwards, the limbs will be put in plaster cast as they finish up with the consolidation process. Much time in rehabilitation will still be ahead.

Barcelona - 00/00/0000

 

Lourdes Segade / Picturetank SEL0456367

Sergi and his dog, Black, as they enjoy fresh air outside their home. Sergi has monolateral external fixators in his legs in order to add 12.2 cm on each shinbone. It is the beginning of the process, that will lead him to add around 30 centimeters to his legs and around 10 to his arms. The whole limb lengthening takes at least four years.The limb lengthening practiced by Dr. Ginebreda and his team in Barcelona consists on three main surgical procedures (in some cases they need more than three) that the child undergoes in a time lapse of three to five years. They can stretch shinbones, thighbones and the humerus. During surgery the doctors break the bone and fix it to a monolateral external fixator. The fixator has a scale with millimeters and the child must turn a key 1 mm per day until the prescribed length is achieved. As the child adds millimeters to the scale in the fixator, their bones stretch while they heal. Not every child’s bones can stretch to the maximum. It will depend on their age, on their tissues (mainly the muscle) and on some other things. The maximum length given to the thighbones and the shinbones with this procedure is 15 cm. The humerus generally needs no more than 10-12 cm, depending on the length of the forearm.When the lengthening process is over, the child still must wear the fixators until the bone is strengthened. Afterwards, the limbs will be put in plaster cast as they finish up with the consolidation process. Much time in rehabilitation will still be ahead.

Banyoles, Girona - 00/00/0000

 

Lourdes Segade / Picturetank SEL0456361

Sergi makes his dressings in the afternoon. The first month after his surgery, it was his mother who wanted to make them every day for she didn't trust any one else. After that first month, the boy has got accustomed to make them and then his mom supervises the results. .Sergi has Achondroplasia, a rare genetic condition that leads to short limbs, a prominent forehead and some other specific physical features, as well as health problems in some cases.Sergi underwent his first surgery in september 2011. Almost one year after surgery he will be able to see his legs free of fixators, plasters or prosthesis. The shinbone lengthening will add 12.2 centimeters. He will after need to learn how to use both legs and feet properly again.He still has some three years –at least– of lengthening ahead. Doctors will add up to 15 centimeters to his thighbones and up to 10 to the humerus. The surgical procedures will provide him with a much better life quality.

Banyoles, Girona - 00/00/0000

 

Lourdes Segade / Picturetank SEL0456353

Eva comforts his son, Sergi, who is crying after she has told him off for a bad behaviour..Sergi has Achondroplasia, a rare genetic condition that leads to short limbs, a prominent forehead and some other specific physical features, as well as health problems in some cases.Sergi underwent his first surgery in september 2011. Almost one year after surgery he will be able to see his legs free of fixators, plasters or prosthesis. The shinbone lengthening will add 12.2 centimeters. He will after need to learn how to use both legs and feet properly again.He still has some three years –at least– of lengthening ahead. Doctors will add up to 15 centimeters to his thighbones and up to 10 to the humerus. The surgical procedures will provide him with a much better life quality.

Banyoles, Girona - 00/00/0000

 

Lourdes Segade / Picturetank SEL0456332

Dr. Ignacio Ginebreda (holding the patient's leg) and Dr. Jorge Tapiolas prepare Sergi minutes before the surgery begins. They will put monolateral external fixators in Sergi's legs in order to correct the curvature in his shinbones and in order to add more than 12 cm to his height. The whole procedure will last less than two hours...The complete limb lengthening practiced by Dr. Ginebreda and his team in Barcelona consists on three main surgical procedures (in some cases they need more than three) that the child undergoes in a time lapse of three to five years. They can stretch shinbones, thighbones and the humerus. .During surgery the doctors break the bone and fix it to a monolateral external fixator. The fixator has a scale with millimeters and the child must turn a key 1 mm per day until the prescribed length is achieved. As the child adds millimeters to the scale in the fixator, their bones stretch while they heal. Not every child’s bones can stretch to the maximum. It will depend on their age, on their tissues (mainly the muscle) and on some other things. The maximum length given to the thighbones and the shinbones with this procedure is 15 cm. The humerus generally needs no more than 10-12 cm, depending on the length of the forearm..When the lengthening process is over, the child still must wear the fixators until the bone is strengthened. Afterwards, the limbs will be put in plaster cast as they finish up with the consolidation process. Much time in rehabilitation will still be ahead.

Barcelona - 00/00/0000

 

Lourdes Segade / Picturetank SEL0456366

In the tub of the hotel she stays at in Barcelona with her parents, María (15) admires her legs during her first bath after one year and a half not being able to have a normal shower or a bath. She has been sitting on a wheel chair for all that long time and she was cleaned there. The plaster cast of her legs (which covered from ankle to groin) has been removed in the morning, and she now can see her legs without it and without the monolateral external fixators that have added 30 cm to them and which she wore previous to the plaster cast. ..The complete limb lengthening practiced by Dr. Ginebreda and his team consists on three surgical procedures (in some cases they need more than three) that the child undergoes in a time lapse of three to five years. They can stretch shinbones, thighbones and the humerus. .During surgery the doctors break the bone and fix it to a monolateral external fixator. The fixator has a scale with millimeters and the child must turn a key 1 mm per day until the prescribed length is achieved. As the child adds millimeters to the scale in the fixator, their bones stretch while they heal. Not every child’s bones can stretch to the maximum. It will depend on their age, on their tissues (mainly the muscle) and on some other things. The maximum length given to the thighbones and the shinbones with this procedure is 15 cm. The humerus generally needs no more than 10-12 cm, depending on the length of the forearm..When the lengthening process is over, the child still must wear the fixators until the bone is strengthened. Afterwards, the limbs will be put in plaster cast as they finish up with the consolidation process. Much time in rehabilitation will still be ahead.

Barcelona - 00/00/0000

 

Lourdes Segade / Picturetank SEL0456363

From left to right: Sergi (10), Mariona, Pol (7), Sergi and Damià as they run in a gymkhana organized by AFAPAC, an association for children and families affected by Achondroplasia, a rare genetic condition that leads, amongst other features, to short limbs. In September 2011, Sergi underwent a surgical procedure that has added 12.2 cm to his legs. Pol, who is still too young to go through the process of lengthening, will undergo suregery when he gets 10 or 11. And Sergi (holding Pol) finished the whole process in 1993. He added 30 cm in his legs and about 12 in his arms. He's now an active adult who practices sports and leads what we call a "normal" life...The complete limb lengthening practiced by Dr. Ginebreda and his team in Barcelona consists on three main surgical procedures (in some cases they need more than three) that the child undergoes in a time lapse of three to five years. They can stretch shinbones, thighbones and the humerus. .During surgery the doctors break the bone and fix it to a monolateral external fixator. The fixator has a scale with millimeters and the child must turn a key 1 mm per day until the prescribed length is achieved. As the child adds millimeters to the scale in the fixator, their bones stretch while they heal. Not every child’s bones can stretch to the maximum. It will depend on their age, on their tissues (mainly the muscle) and on some other things. The maximum length given to the thighbones and the shinbones with this procedure is 15 cm. The humerus generally needs no more than 10-12 cm, depending on the length of the forearm..When the lengthening process is over, the child still must wear the fixators until the bone is strengthened. Afterwards, the limbs will be put in plaster cast as they finish up with the consolidation process. Much time in rehabilitation will still be ahead.

Tordera, Barcelona - 00/00/0000

 

Lourdes Segade / Picturetank SEL0456444

 

Lourdes Segade / Picturetank SEL0456343

Lorena (15) goes out for a ride on her automatic wheel chair in a service road near her home, in Yecla (Murcia). For some years now she has been in the limb lengthening process. She is now having the thighbones stretched by the monolateral external fixators. Lorena's bigger body and the fact that her father leaves very early for work does not allow her mom to take her to the high school nor to go out often and that's why only on weekends she can go out. She has spent three months in bed and she has been having some teachers giving her classes at home. Lorena's family moved to a house (owned by them) close to the one where they used to live because the chair was too big for the doors. However, in this house Lorena's room was too small and they put the bed in the living-room. Lorena's father has built an structure with an engine in order to load and move Lorena when she needs to be washed or when she needs to urinate. ..The complete limb lengthening practiced by Dr. Ginebreda and his team consists on three surgical procedures (in some cases they need more than three) that the child undergoes in a time lapse of three to five years. They can stretch shinbones, thighbones and the humerus. .During surgery the doctors break the bone and fix it to a monolateral external fixator. The fixator has a scale with millimeters and the child must turn a key 1 mm per day until the prescribed length is achieved. As the child adds millimeters to the scale in the fixator, their bones stretch while they heal. Not every child’s bones can stretch to the maximum. It will depend on their age, on their tissues (mainly the muscle) and on some other things. The maximum length given to the thighbones and the shinbones with this procedure is 15 cm. The humerus generally needs no more than 10-12 cm, depending on the length of the forearm..When the lengthening process is over, the child still must wear the fixators until the bone is strengthened. Afterwards, the limbs will be put in plaster cast

Yecla, Murcia - 00/00/0000

 

Lourdes Segade / Picturetank SEL0456359

María (15) arrives at her grandmother's after high school in a special transportation for disabled kids. She has been sitting on a wheel chair for more than one and a half year and she now can walk with the help of a walker. She has undergone several surgical procedures in order to have her legs lengthened and thanks to that she has gained 30 cm. In 2013 she will have the procedure practiced on her arms. Since she started the process of limb lengthening she has been living at her grandmother's while her parents and brother stayed at home. The flat is too narrow for a wheel chair and one has to go two stories up without elevator. Now that she can walk again, Maria spends the weekends at home...The complete limb lengthening practiced by Dr. Ginebreda and his team in Barcelona consists on three main surgical procedures (in some cases they need more than three) that the child undergoes in a time lapse of three to five years. They can stretch shinbones, thighbones and the humerus. .During surgery the doctors break the bone and fix it to a monolateral external fixator. The fixator has a scale with millimeters and the child must turn a key 1 mm per day until the prescribed length is achieved. As the child adds millimeters to the scale in the fixator, their bones stretch while they heal. Not every child’s bones can stretch to the maximum. It will depend on their age, on their tissues (mainly the muscle) and on some other things. The maximum length given to the thighbones and the shinbones with this procedure is 15 cm. The humerus generally needs no more than 10-12 cm, depending on the length of the forearm..When the lengthening process is over, the child still must wear the fixators until the bone is strengthened. Afterwards, the limbs will be put in plaster cast as they finish up with the consolidation process. Much time in rehabilitation will still be ahead.

Lomo Los Frailes (Las Palmas de, Gran Canaria (Canary Islands) - 00/00/0000

 

Lourdes Segade / Picturetank SEL0456345

Lorena's mom, Juani, cleans her after urinating, at their home in Yecla (Murcia). Lorena's father has built an structure with an engine in order to load and move Lorena when she needs to be washed or when she needs to pee. For some years now she has been in the limb lengthening process. She is now having the thighbones stretched by the monolateral external fixators. Lorena's bigger body and the fact that her father leaves very early for work does not allow her mom to take her to the high school. She has spent three months in bed and she has been having some teachers giving her classes at home. Lorena's family moved to a house (owned by them) close to the one where they used to live because the chair was too big for the doors. However, in this house Lorena's room was too small and they put the bed in the living-room. ..The complete limb lengthening practiced by Dr. Ginebreda and his team consists on three surgical procedures (in some cases they need more than three) that the child undergoes in a time lapse of three to five years. They can stretch shinbones, thighbones and the humerus. .During surgery the doctors break the bone and fix it to a monolateral external fixator. The fixator has a scale with millimeters and the child must turn a key 1 mm per day until the prescribed length is achieved. As the child adds millimeters to the scale in the fixator, their bones stretch while they heal. Not every child’s bones can stretch to the maximum. It will depend on their age, on their tissues (mainly the muscle) and on some other things. The maximum length given to the thighbones and the shinbones with this procedure is 15 cm. The humerus generally needs no more than 10-12 cm, depending on the length of the forearm..When the lengthening process is over, the child still must wear the fixators until the bone is strengthened. Afterwards, the limbs will be put in plaster cast as they finish up with the consolidation process. Much time in rehabilitation will still be ahead.

Yecla, Murcia - 00/00/0000

 

Lourdes Segade / Picturetank SEL0456335

Sergi (on the right) plays with his brother and a friend in the basement. The wheel chair is not a problem for him when game is about punching, racing or doing many other things that one could never imagine could be done on a wheel chair. It has now been three months and a half since he was operated on his legs in order to correct the curvature of the shinbones and to add at least 12 cm to them...The complete limb lengthening practiced by Dr. Ginebreda and his team in Barcelona consists on three main surgical procedures (in some cases they need more than three) that the child undergoes in a time lapse of three to five years. They can stretch shinbones, thighbones and the humerus. .During surgery the doctors break the bone and fix it to a monolateral external fixator. The fixator has a scale with millimeters and the child must turn a key 1 mm per day until the prescribed length is achieved. As the child adds millimeters to the scale in the fixator, their bones stretch while they heal. Not every child’s bones can stretch to the maximum. It will depend on their age, on their tissues (mainly the muscle) and on some other things. The maximum length given to the thighbones and the shinbones with this procedure is 15 cm. The humerus generally needs no more than 10-12 cm, depending on the length of the forearm..When the lengthening process is over, the child still must wear the fixators until the bone is strengthened. Afterwards, the limbs will be put in plaster cast as they finish up with the consolidation process. Much time in rehabilitation will still be ahead.

Banyoles, Girona - 00/00/0000

 

Lourdes Segade / Picturetank SEL0456337

Lorena (15) spends some time with her friends before they go out for a birthday celebration while she will stay at home. For some years now she has been in the limb lengthening process. She is now having the thighbones stretched by the monolateral external fixators. Lorena's bigger body and the fact that her father leaves very early for work does not allow her mom to take her to the high school nor to go out often and that's why only on weekends she can go out. She has spent three months in bed and she has been having some teachers giving her classes at home. Lorena's family moved to a house (owned by them) close to the one where they used to live because the chair was too big for the doors. However, in this house Lorena's room was too small and they put the bed in the living-room. Lorena's father has built an structure with an engine in order to load and move Lorena when she needs to be washed or when she needs to urinate. ..The complete limb lengthening practiced by Dr. Ginebreda and his team consists on three surgical procedures (in some cases they need more than three) that the child undergoes in a time lapse of three to five years. They can stretch shinbones, thighbones and the humerus. .During surgery the doctors break the bone and fix it to a monolateral external fixator. The fixator has a scale with millimeters and the child must turn a key 1 mm per day until the prescribed length is achieved. As the child adds millimeters to the scale in the fixator, their bones stretch while they heal. Not every child’s bones can stretch to the maximum. It will depend on their age, on their tissues (mainly the muscle) and on some other things. The maximum length given to the thighbones and the shinbones with this procedure is 15 cm. The humerus generally needs no more than 10-12 cm, depending on the length of the forearm..When the lengthening process is over, the child still must wear the fixators until the bone is strengthened. Afterwards, the limbs will be put in plast

Yecla, Murcia - 00/00/0000

 

Lourdes Segade / Picturetank SEL0456350

Sergi shows funny faces for he feels cold after shower. He has to take showers sitting and water cannot be poured on his legs. .He has monolateral external fixators in his legs in order to add 12.2 cm on each shinbone. It is the beginning of the process that will lead him to add around 30 centimeters to his legs and around 10 to his arms. The whole limb lengthening takes at least four years.The limb lengthening practiced by Dr. Ginebreda and his team in Barcelona consists on three main surgical procedures (in some cases they need more than three) that the child undergoes in a time lapse of three to five years. They can stretch shinbones, thighbones and the humerus. During surgery the doctors break the bone and fix it to a monolateral external fixator. The fixator has a scale with millimeters and the child must turn a key 1 mm per day until the prescribed length is achieved. As the child adds millimeters to the scale in the fixator, their bones stretch while they heal. Not every child’s bones can stretch to the maximum. It will depend on their age, on their tissues (mainly the muscle) and on some other things. The maximum length given to the thighbones and the shinbones with this procedure is 15 cm. The humerus generally needs no more than 10-12 cm, depending on the length of the forearm.When the lengthening process is over, the child still must wear the fixators until the bone is strengthened. Afterwards, the limbs will be put in plaster cast as they finish up with the consolidation process. Much time in rehabilitation will still be ahead.

Banyoles, Girona - 00/00/0000

 

Lourdes Segade / Picturetank SEL0456356

 

Lourdes Segade / Picturetank SEL0456439

 

Lourdes Segade / Picturetank SEL0456288

Lorena (17) awaits her turn at the doctor's waiting room. Lorena underwent her last major surgery in september 2011, one year ago, in order to have the thighbones lengthened. It was her eighth surgery. For some years now she has been in the limb lengthening process. Lorena's bigger body and the fact that her father leaves very early for work did not allow her mom to take her to high school during the first four months after the last surgery. She spent three months in bed and she had some teachers giving her classes at home. Lorena's family moved to a house (owned by them) close to the one where they used to live because her wheel chair was too big for the doors. However, in the new house Lorena's room was too small and they had to put her bed in the living-room...The complete limb lengthening practiced by Dr. Ginebreda and his team in Barcelona consists on three main surgical procedures (in some cases they need more than three) that the child undergoes in a time lapse of three to five years. They can stretch shinbones, thighbones and the humerus. .During surgery the doctors break the bone and fix it to a monolateral external fixator. The fixator has a scale with millimeters and the child must turn a key 1 mm per day until the prescribed length is achieved. As the child adds millimeters to the scale in the fixator, their bones stretch while they heal. Not every child’s bones can stretch to the maximum. It will depend on their age, on their tissues (mainly the muscle) and on some other things. The maximum length given to the thighbones and the shinbones with this procedure is 15 cm. The humerus generally needs no more than 10-12 cm, depending on the length of the forearm..When the lengthening process is over, the child still must wear the fixators until the bone is strengthened. Afterwards, the limbs will be put in plaster cast as they finish up with the consolidation process. Much time in rehabilitation will still be ahead.

Barcelona, Barcelona - 00/00/0000



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