My Neuro Hero

This is Oliver, our cheeky loving two year old who loves Hey Duggee and trampolines. He also happens to be a medical miracle, a Neuro Hero, surpassing all expectations with one huge desire…

THE WISH TO WALK

Unfortunately, just before Christmas, Oliver was diagnosed with an unbelievably rare life limiting condition known as Pontocerebellar Hypoplasia (PCH). PCH is a neurodegenerative disorder characterised by progressive atrophy (wasting away) of various parts of the brain. He has the rarest type also referred to as Encephalopathy Fatal Infantile. Children with this condition are born very poorly and pass away shortly after birth. Those that continue to live, do not exceed infancy. Not only this, but the condition is of a mitochondrial nature which means in some cells, Oliver’s batteries will not last as long as everyone else’s :( . Oliver’s condition is so rare that there are under 10 cases reported worldwide to date. There is no treatment or cure for PCH hence why it is life limiting. What makes Oliver even more unique is they have never seen it present like it has in Oliver so he is literally one in many million, if not billion!

The part of the brain that has been affected in Oliver means his body has to manually learn how to do everything many, many times before he can do it. He suffers from hypertonia (stiff leg and hip muscles) and low truncal tone (weak stomach muscles) making mobility difficult. Oliver needs daily physio to help improve these muscles which is often painful. He needs round the clock care as he cannot talk, sit, walk or feed himself. He is not able to play like other children and as a result misses out. He is also prone to aspirational pneumonia and has nocturnal epilepsy putting him at risk of Sudden Unexplained Death in Epilepsy (SUDEP) meaning we have to take turns to monitor him through the night. Due to his lack of mobility, Oliver is at high risk of hip migration, hip dislocation and subsequently hip surgery in the near future if he doesn’t begin to walk.

Given all of this, Oliver is currently exceeding all expectations and is doing ok!!! He does not have a lot of the symptoms of PCH, is otherwise very healthy and is slowly but surely progressing!! Only one part of his brain is currently affected and there have been no signs of any degeneration here. Whilst Oliver is very developmentally delayed, he is showing signs HE DESPERATELY WANTS TO WALK!!!

This is where the Innowalk comes in. The Innowalk is an amazing piece of equipment that effectively makes a child walk, a bit like a cross trainer except the machine does it all for you! It fully supports the posture of children with physical disabilities and allows them to maintain an upright position, develop their mobility and give them a sense of independence. For Oliver, it would help decrease the stiffness in his legs and hips (and therefore reduce pain and the need for medication), improve his core muscles and head control and build up his strength to be able to sit independently. It will also give him the best chance at walking and reduce the need for hip surgery in the future. See Oliver in action in one here!!: https://www.youtube.com/channel/UCk8_oOGUAMPWiawo_yR3aoA or search My Neuro Hero

Sadly this nor anything similar is available on the NHS. We can purchase one privately but it costs £16,000. As much as we would love to buy him one, having myself given up work to care for Oliver we are not in a financial position to do so.

A lot of people have said to me “wow, £16,000 is a LOT of money”. Yes it is! However, when you see how hard your child works and how much they struggle on a daily basis, just to do the basic things us able bodied individuals take for granted, when you know how much this could improve their life,YOU DO WHATEVER IT TAKES. And this page is just the start with plans for fund raising events to follow!

Our little boy is a trooper, a real life Neuro Hero! His life has consisted of chronic pain, operations, investigations, admissions, therapies, daily physio, daily speech and language therapy, countless medications and seizures. He constantly struggles with his brain trying to tell his body to do or to move quickly enough. And yet he does it all laughing or with a smile on his face! Every time he comes back fighting, stronger than before.

We have no prognosis for Oliver, we do not know what the future holds for him. But we want to invest our energy into giving Oliver everything we can, every opportunity we can, whilst we can :) . He is a beautiful little boy inside and out and deserves the world. At the end of the day, no matter how complicated his condition, his life, his future is, it boils down to one simple thing.

“He is just a little boy who wants to walk”.

Just like all children, he desperately wants to play and have adventures.

Any donation, no matter how small would mean the world to us. We thank you for taking the time to read Oliver’s story and in advance for any contribution you make.

From the bottom of our hearts, Toni-Louise, Steve and our Neuro Hero, Oliver

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