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My son Joey is a fantastic boy who through all his challenges has a smile on his face. Joey has such severe epilepsy he can't walk, sit unaided or communicate verbally. He is peg fed and has a VNS which is a pacemaker for the brain to manage his seizures. He has a life-threatening condition and has a genetic condition that is called VPS4A . Only 10 others have it in the world so there is no new therapy that can help and we symptom manage through medicine and a vagal nerve stimulator 

He has started to babble lots and laughs a huge amount since he has had 3 operations to manage his condition. He has had a tough start to life, and I want to make sure he is as comfortable as possible. Sadly his disability living allowance is kept from him so when he lives with me we have to self fund everything.  This is unresolved and for whatever reason joey is getting punished by the system which saddens me 

Up until now funds have been raised for more immediate needs that although necessary, cannot be funded by the local authority or NHS. The struggle continues to raise enough to support ongoing maintenance of Joey’s equipment and costs associated with all those things required for daily living with his condition.

In addition to ongoing therapies and equipment maintenance, as Joey grows, his needs are evolving and he will need access to specialist chairs, further equipment around the home and whilst out and about . He also requires  sensory equipment to ensure he has the best possible learning experiences whilst he gets older 

Any support for Joey’s campaign large or small is hugely appreciated and makes a massive difference to his life.

All funds raised sit with Tree of Hope and are only spent on the things that have a direct impact on Joey and his health and well-being. Donations made by UK taxpayers can also check the box to add gift aid for an additional 25% to be added at no cost .