My nephew Ethan Jolosa is 7 years old; he is very bright, loveable, full of personality, very energetic and sports crazy. He has great determination despite all the difficulties and hurdles he faces on a daily basis.

Just before he was two years old he was diagnosed with Cerebral Palsy (Spastic Diplegia). This is a condition whereby the messages between his brain and his muscles are confused. He unable to prevent his toes from pointing or his legs from wanting to cross over and his muscles are permanently tight. The simplest of tasks can become a great struggle like getting into the car, or trying to get dressed.

Despite this, Ethan leads an active life. He’s a valued and loved member in his class at Pontnewydd Primary school, Cwmbran, which is a main stream local school – and he has lots of friends.

Although Ethan can walk with a walking frame it’s a huge effort for him and he soon gets tired. It is very frustrating and upsetting for him and this is a situation that will only get worse as he gets older. Within the past 12 months he has become more reliant on using his wheelchair, which he is able to self- propel for short distances. With his muscles in such tension Ethan sometimes finds it difficult on his walking frame as his toes are pointed and his legs scissor when he tries to move them.

We have now found a life-changing operation that could alter all this! An operation called Selective Dorsal Rhizotomy (SDR) which can be preformed at Bristol Frenchay Hospital, Bristol by Dr Aquilina with remarkable results. It is not without risks and it will mean a delicate operation on Ethans spine which identifies the nerves that are sending the mixed messages to his legs and feet. These sensory nerves will then be cut, leaving the remaining motor nerves intact. This will then permanently remove the spasticity in Ethan’s legs and allow his brain to teach his muscles how to move without being under tension. It is the only procedure we have found that could provide an end to what Ethan has had to endure.

After the operation Ethan will need to have intensive physiotherapy to teach him to walk properly. We hope that he’ll be able to do some of the things we all take for granted like dressing independently, walk up the stairs, play football and keep up with his friends.

Ethan’s wish is to be able to be independently mobile and play with his friends like any other 7 year old boy.

My family, friends and I have started fundraising and Ethan is determined to raise money himself. He is hoping to do a sponsored hike using his frame with his beaver group, and a sponsored bike ride using his specially adapted trike.

But all of this is a drop in the ocean and your help would be greatly appreciated.  I would love your support in any way possible. 

Thanks so much

Danielle Jolosa

 

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