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My Neuro Hero

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The Big Day28th Jul 2021
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This is Oliver. He is our cheeky fun loving three year old boy who has a thirst for learning and life. He is a miracle. According to the medics he shouldn’t be here. But he is. Fighting and striving. Making his own path. Proving everyone wrong.

He is one in a billion. The only one in the world with his exact type of the condition Pontocerebellar Hypoplasia Type 6. PCH6 is an unbelievably rare life limiting neurodegenerative condition with a prognosis of up to 12 months. Yet, here we are, three and a half years down the line and everyday, instead of getting weaker, he gets stronger and stronger. Baffling the medics with the way he presents, the progress he makes and his determination. He is clever, caring, empathetic and more.

He goes through so so much – procedures, tests, appointments, therapies, the list goes on. Like many other children with health conditions and more than any child his age should have to :(. Yet he takes it all in his stride, with a smile on his face, spreading cheer wherever he goes :).

And this is how we came up with the name My Neuro Hero. Because put simply he is a true life superhero.

We were overwhelmed with the support we received last year when we crowd funded for some equipment to help Oliver. We wanted to turn something so negative into something really positive and it was. It was so heart warming to know how many people care.

We are reminded regularly about what could happen to Oliver, all of the horrific things that will rob us of our child. And, because Oliver is like no child they have ever seen we have no prognosis, we have no idea what will happen.

Which leaves us with a choice…. wrap him up in cotton wool, keep him close. Grieve, live life looking over our shoulder waiting for what could be the inevitable.

Or…. be positive. Be thankful for what we have, make the most of what we have. Make memories, live in and for the moment, celebrate all the small things. Be happy.

And this is what we have chosen to do. Some may not agree with writing about our child but we want to celebrate whatever time Oliver has, celebrate all his achievements when we are constantly facing the unknown. We want everyone to know how special he is, how amazing, how unique!

By writing about our journey we hope to help others on similar paths, share what we have learnt and continue to do so, as others have helped us. We will hopefully be on this journey for many years to come and we would love to share it with you.

Toni-Louise, Steve and Oliver, our Neuro Hero xXx

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