Toby fights the devastating effects of Dravet Syndrome every day, as does everyone close to him. Not only does he have hundreds of partial seizures throughout the day but he suffers from life threatening tonic clinic seizures a few times a week when he often stops breathing and always requires oxygen. The impact of Dravet is not just the seizures, it always means he has significant developmental delays that increase with age.
Toby no longer eats so is fed through a tube in his stomach and he doesn’t talk or walk, he does however smile a lot and has an infectious laugh. Toby is a very determined little fellow so maybe one day he will does these things but in meantime he requires additional help to support him both with his physical and mental development.
This is where Toby’s Trust comes in. The funds raised by our family, friends and local community give us the opportunity to get Toby and the family the help we need. So far we’ve been able to buy a specialist buggie, seizure and breathing alarms and a fantastic chair that gives him the additional support he needs, which all makes life that little bit easier to handle.
With the support of our wonderful family and friends will do everything we can to support Toby as he grows and develops so that he has every chance of making the most of his life. Having the ability to provide him with specialist equipment, sensory toys, alternative therapies and respite care will help us do this. The Trust is set up to fund as much of that as possible.
We have set up an official legal Trust with an independant Trustee who oversees any spending from Toby’s Trust fund. All the accounts are compiled annually by an accountant and it can be audited by HMRC so everything is transparent and clear to see.
We opted for a Trust rather than a charity as the time and administration required to set up and run a Charity is very onerous and in order to qualify a Charity must help more than one person. We want to pour our energy into Toby, not paperwork.
As a Trust isn’t a registered charity we can’t use Just Giving or Virgin money so we ask all donations be paid straight into Toby’s Trust bank account. We will endeavour to keep this website up to date with how we are using your donations to help Toby, and will always be happy to talk to anyone who would like to know more. Thank you for supporting our family and helping us fight this disorder.