Emily's SDR Surgery
Donation protected
Our daughter Emily was born three months premature and complications from her birth left her with cerebral palsy (CP). Emily is a happy and enthusiastic child but the damage to her brain at birth prevents her from controlling the muscles in her legs due to “spasticity” or in other words tightness of her muscles. Always a fighter, at 8 years old Emily walks independently with the aid of leg braces but CP prevents her from recognizing her full potential. Emily suffers from frequent falls and fatigue, can’t swim, ride a bike, climb stairs easily or jump – tough when she dreams of playing basketball!
While Emily's CP only affects her legs, as she ages the structural damage done to her skeleton and muscle from this spasticity threatens to take its toll on her body leading to “premature aging”, bone and joint pain, numerous operations and potentially full loss of mobility.
Surgery to permanently address Emily’s condition does exist but remains rare and is not practiced in France. We are therefore extremely fortunate that world renowned neurosurgeon, Dr T.S. Park of St. Louis Children’s Hospital has accepted Emily’s case for a life changing surgery called Selective Dorsal Rhizotomy (which he helped pioneer) and believes that she is an ideal candidate. The surgery is now scheduled for mid November 2018.
Through this operation Emily will benefit from permanent surgical elimination of the spasticity that is at the heart of CP. She will gain significantly in terms of mobility, stamina and independence and be able to manage in all environments. In short she will be able to do the things she only dreams of today. However, the operation and years of physical re-education does come at considerable expense and, given that it is performed only in the US, is not eligible for French medical insurance. This is where we are hoping that you can help by participating in this crowdfunding campaign to give Emily the chance to recognize her true potential.
About the operation and Emily’s post-op re-education campaign
Emily will need to spend 4-5 weeks in Saint Louis, Missouri to undergo two significant medical procedures and will then embark on an intensive multi-year physio-therapy program to effectively learn how to walk again and strengthen and maintain her muscles.
Selective Dorsal Rhizotomy
SDR surgery for children with CP was pioneered by Dr T.S. Park and has been practiced at Saint Louis Children’s Hospital for over 30 years with almost 4,000 children receiving this precious gift since its inception. Surgery lasts over 4 hours and involves an incision into the spinal cord. After separating the motor and sensory nerves, the sensory nerves are individually electrically stimulated to test their function. Those found to be the cause of the spasticity are surgically severed leaving only the correctly functioning nerves in place. Through this process up to 70%-80% of the faulty nerves can be permanently eliminated leaving the child with “near normal” muscle function.
Muscle/Tendon Lengthening Procedure (PERCS)
With SDR having relieved the spasticity, Emily will need to undergo further orthopedic surgery for tendon lengthening to ensure that her muscles and tendons are sufficiently long to ensure full movement after all of the years of tightness. This can take place in the hamstring, achilles tendon and gastroc muscle depending on each individual’s requirements.
Re-education and Physiotherapy
It will take 1-2 years of intensive daily physio therapy for Emily to fully recover. This will start shortly after her operations in the US but will continue upon her return. In addition to juggling a return to school Emily will have 3 physio sessions a week and will have 2 sessions with a personal coach in a gym that we will be building at home.
Please note some media links about how Dr. Park is changing childrens’ lives:
- Television footage of New Zealand children traveling to the US for treatment
- Future We Only Dreamed Of
- Surgery to Help Children Walk Draws Parents Across World to St. Louis.
While Emily's CP only affects her legs, as she ages the structural damage done to her skeleton and muscle from this spasticity threatens to take its toll on her body leading to “premature aging”, bone and joint pain, numerous operations and potentially full loss of mobility.
Surgery to permanently address Emily’s condition does exist but remains rare and is not practiced in France. We are therefore extremely fortunate that world renowned neurosurgeon, Dr T.S. Park of St. Louis Children’s Hospital has accepted Emily’s case for a life changing surgery called Selective Dorsal Rhizotomy (which he helped pioneer) and believes that she is an ideal candidate. The surgery is now scheduled for mid November 2018.
Through this operation Emily will benefit from permanent surgical elimination of the spasticity that is at the heart of CP. She will gain significantly in terms of mobility, stamina and independence and be able to manage in all environments. In short she will be able to do the things she only dreams of today. However, the operation and years of physical re-education does come at considerable expense and, given that it is performed only in the US, is not eligible for French medical insurance. This is where we are hoping that you can help by participating in this crowdfunding campaign to give Emily the chance to recognize her true potential.
About the operation and Emily’s post-op re-education campaign
Emily will need to spend 4-5 weeks in Saint Louis, Missouri to undergo two significant medical procedures and will then embark on an intensive multi-year physio-therapy program to effectively learn how to walk again and strengthen and maintain her muscles.
Selective Dorsal Rhizotomy
SDR surgery for children with CP was pioneered by Dr T.S. Park and has been practiced at Saint Louis Children’s Hospital for over 30 years with almost 4,000 children receiving this precious gift since its inception. Surgery lasts over 4 hours and involves an incision into the spinal cord. After separating the motor and sensory nerves, the sensory nerves are individually electrically stimulated to test their function. Those found to be the cause of the spasticity are surgically severed leaving only the correctly functioning nerves in place. Through this process up to 70%-80% of the faulty nerves can be permanently eliminated leaving the child with “near normal” muscle function.
Muscle/Tendon Lengthening Procedure (PERCS)
With SDR having relieved the spasticity, Emily will need to undergo further orthopedic surgery for tendon lengthening to ensure that her muscles and tendons are sufficiently long to ensure full movement after all of the years of tightness. This can take place in the hamstring, achilles tendon and gastroc muscle depending on each individual’s requirements.
Re-education and Physiotherapy
It will take 1-2 years of intensive daily physio therapy for Emily to fully recover. This will start shortly after her operations in the US but will continue upon her return. In addition to juggling a return to school Emily will have 3 physio sessions a week and will have 2 sessions with a personal coach in a gym that we will be building at home.
Please note some media links about how Dr. Park is changing childrens’ lives:
- Television footage of New Zealand children traveling to the US for treatment
- Future We Only Dreamed Of
- Surgery to Help Children Walk Draws Parents Across World to St. Louis.
Organizer
Tristan Southgate
Organizer
Paris
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