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Hard to believe that Eddie is now SIX! He's come so far, but faces so many challenges still. We wish it were different but we need to keep fundraising for both Eddie's medication and for equipment. Please read below for more about our boy, and our hopes and aims for him.
Eddie, has a rare genetic condition which caused a (or some) bleeds on his brain in utero, leaving him with a severe brain injury. Consequently Eddie has various neurological conditions, including cortical vision impairment (he is registered as functionally blind), Grade 4 Cerebral Palsy affecting all four limbs, intractable epilepsy and global developmental delay.
The biggest battle Eddie has faced, and still faces are the ongoing seizures he experiences daily. We have been campaigning to get Eddie access to medical cannabis, as this is the only medication that has proved to help manage his seizure burden. But despite the rescheduling of medicinal cannabis it is simply NOT being provided by the NHS so Eddie has a private prescription for medicinal cannabis. We are raising funds to try sustain the high costs of this medication privately.
As Eddie grows life becomes harder to manage outside the home in a very practical, physical sense, so there are two pieces of equipment we are hoping to fund moving forwards;
* A portable mobile hoist
* A low sensory, multi-functional safe space bed for use in hospital and when visiting family/friends
Thank you for taking the time to read about our beautiful, determined little boy. The support he receives is truly invaluable to us as a family. Having a child with complex needs is both a challenge and a joy. The ridiculous costs associated with anything 'special needs' however is truly eye watering. We couldn't do it without help, and we are so grateful for the help we have received.
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, then the funds will be used, if appropriate, to fund support for 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 objects, then any funds that cannot be used will be transferred to be used for the general charitable purposes of Tree of Hope.
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