Weʼre raising £1,000 to support Emile's recovery from spine nerves surgery
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My nephew Emile is a bright, happy and very active 5 year old boy, who lives in the South of France, and enjoys school, swimming and riding ponies. But Emile was born with a form a Cerebral Motor Infirmity, affecting both his arms and legs. The cause of his condition is unknown, and has affected his learning of all basic motor skills. This year, Emile will undergo a surgical procedure that could potentially reverse some the most critical symptoms of his condition!
In September, I have registered for an Ultra-marathon challenge in the UK. The Thames Path Challenge will happen on 7/8th of September 2019, and is 100km challenge going from London to Henley-on-Thames along the river Thames. I am currently training to complete this challenge as a jogger, and hope to finish the race in 20-24 hours. More info: Thames Path Challenge 2019
I am taking this opportunity to organise a fundraising for Emile, with the funds used to support his recovery from the surgery, and the extra care he will require for the next 2 years. Part of the funds will also be donated to the french registered charity "Un pas pour Mathieu", which supports children with motor disfunctions by providing specialised equipments to their family and training to medical practicioners. More info: https://www.unpaspourmathieu.org/
As I have been working in the Rare Disease space for the past 2 years, I am also very keen to support the SWAN UK charity. They supports children in the UK born with undiagnosed, unamed conditions. If I manage to reach or go above the objective I have set up, I will donate 15% of the fund to SWAN. More info: https://www.undiagnosed.org.uk/support-information/
Thanks all for your support! Full details about Emile's story below!
My nephew Emile is a bright, happy and very active 5 year old boy, who enjoys school, swimming and his poney lessons. But Emile was born with a form a Cerebral Motor Infirmity, affecting both his arms and legs. The cause of his condition is unknown, and it has affected his learning of all the basic motor skills, such as walking or grabing an object.
Emile has received extensive physiotherapy from the first few months of his life, and has made tremendous progress! He can now kneel and crawl by himself, stand and walk around school and the house with his walker, manoeuver his wheelchair... His most recent achievement was to climb by himself, on his knees, the stairs of his house!
Today, the main health concern for Emile is his spasticity. Spasticity is a unvoluntary contraction of the muscles, which happens particularly when attempting to strectch it. For instance, when Emile is trying to extend his leg to sit or walk, his hamstrings automatically contract very strongly. This is not only preventing him from moving, but is also very painful (imagine a very bad cramp lasting several minutes!).
Because the muscles are constantly contracted, spasticity slowly leads to a stiffness of the limbs and trunk, and with age certain muscles start to retract. This would only get worse, as Emile's bones are growing, while his muscles are getting smaller; meaning that he could loose all the mobility he worked so hard to achieve.
Luckily, as Emile is only 5 years old, there are options available to him to reverse some of the symptoms of his condition! In February this year, Emile, his parents and 3 brothers and sisters are all travelling to Germany, where Emile will undergo a Selective Dorsal Rhizotomy (SDR). This procedure could strongly reduce or even eliminate his plasticity! https://www.stlouischildrens.org/conditions-treatments/center-for-cerebral-palsy-spasticity/about-selective-dorsal-rhizotomy
In short, SDR involves cutting about 60% of the sensitive fibers that comes from the muscles and enter the spinal cord. The most successful method for SDR has been developped by an americain surgeon in St Louis, who has trained Emile's surgeon, the Dr Haberl in Bonn. Although there is no guaranty about the outcome of the procedure of Emile, we are very hopeful that it will reduce the pain, and allow him to continue progressing and live his life to the fullest!
The total cost of the surgery is almost 20,000€, and Emile will require at least 2 years of additional cares which cannot be quantified (medical care, but also home schooling for instance). I am organising this fundraising to support him and his family, but also 2 charities in France and in the UK that support children like Emile in their continuous efforts to live a normal live!
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Capucine Le Guen started crowdfunding