Give Vinnie a safe garden

All about Vinnie

Vinnie was born with a genetic condition called Spinal muscular atrophy Type 1. This is a condition that normally sees the children with it passing away before the age of 2. Fortunately when vinnie was diagnosed there was a clinical trial for a drug called spinraza, which requires a lumbar puncture every 17 weeks to administer the drug. Vinnie started the trial in 2015 but he had already progressed severely with the condition.

What does SMA mean for Vinnie?

Unfortunately for Vinnie this has meant that before starting treatment he had lost the movement in his arms and legs. He lost his ability to swallow at 5 months old and has been fed via a tube ever since. His respiratory muscles are greatly affected and he has to use a ventilator for 16 hours a day, this is called bipap. Vinnie has to have airway clearance regularly , involving a suction machine and a special device called a cough assist to clear his lungs. All this is 24 hours a day and it’s what keeps him alive.

Brain damage may 2022,

On may 14th vinnie choked to death in the back of his van. Life saving measures were not taken and he was down for 20 minutes before the paramedics managed to bring him back but he has been left with catastrophic brain injuries.

Our vinnie has lost all the movement he has gained over the last 7 years, this means he can no longer operate his beloved iPad or drive his power chair. These two things were the only independence that he had and that has had that taken away from him. Fortunately, it’s seems that Vinnie is still cognitively able even though he has lost his voice. He has been left with seizures which are debilitating and he cannot tolerate sitting up. He has to use his ventilator most of the day now as his airway is unstable.

He is now an incredibly angry little boy who has lost his quality of life all because his dad did not follow the care that has kept vinnie alive for 6 years past what they told us he would live.

Our family

I cannot even begin to articulate what this has meant for us as a family. Our life has be thrown into a world of pain and time stands still for us. Our once very active and adventurous life has ended, we are practically housebound. Before this we had travelled all over Europe with vinnie, giving him and his sister the best life. Jobs have been lost, debts have occurred from months in hospital. Thousands of pounds spent on extra therapies to try and enhance recovery. For me as his mum, watching my little boy lie there dead and the suffering he has had since has broken my heart. My little boy is not the same, I’ve not seen his beautiful smile or heard his sweet laugh in over a year. It’s soul destroying. We live in fear now that this weakness will end short our beautiful boys little life, a life which he loved and lived to the fullest.

Latest update

We have been in hospital since September 1st 2024. Vinnies airway has slowly been collapsing over the last year. This has meant we’ve not been able to do much as vinnies airway would cut off if he was not in a good position to keep it open. On the 3rd sept he was put on life support and it was decided that he would need a tracheostomy to stay alive. This was done in September and we’ve been in hospital ever since. Vinnie is the best he’s been in years but the governing body for care in the community have stopped my nursing team at home and wish to replace them with carers. This is ridiculous as Vinnie is complexed and needs specialist care by experienced people. We are literally stuck in hospital waiting for trained carers!

What we are trying to achieve for Vinnie

Our back garden was completely derelict when we moved in and so far Andrew has been able to make about 30% of the garden a safe space including a patio and a decking. We still need fencing to secure the garden, to level out all the rest of the garden and build a supporting wall. We would also like in the future to be able to build a Physio and School room for Vinnie out the back. This is massive for Vinnie and us a family as it means we can enjoy our outside space and with it being accessible, means Vinnie is able to be in all areas of the garden with his family, enjoying quality time.

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