Joseph Jenkins

Thanks for taking the time to visit my JustGiving page.

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

He has started to babble a lot and laughs a huge amount since he underwent three 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 withheld from him, so when he lives with me, we have to self-fund everything. This is unresolved, and for whatever reason, Joey is being 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 money to support the ongoing maintenance of Joey’s equipment and cover the costs associated with daily living with his condition.

In addition to ongoing therapies and equipment maintenance, as Joey grows, his needs are evolving. He will need access to specialist chairs, further equipment around the home, and while out and about. He also requires sensory equipment to ensure he has the best possible learning experiences as 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 are held by Tree of Hope and are only spent on things that directly impact Joey’s 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 extra cost.

7.5% of all donations to Tree of Hope in relation to this appeal will be allocated to the general charitable purposes of Tree of Hope to cover our core operating costs.

If we raise insufficient funds or surplus funds, the funds will be used, if appropriate, to support our child's needs in accordance with Tree of Hope's charitable objects. If, in those circumstances, we are unable to use all or part of the funds for the benefit of our child in accordance with Tree of Hope's charitable objectives, any funds that cannot be used will be transferred for general charitable purposes of Tree of Hope.