What is the money for?

While Toby looks like a normal, healthy boy, he is currently on 3 anti-epileptic drugs, the ketogenic diet and has a range of seizures from focal to full tonic clonic on a daily basis which have a huge impact on his body and brain. He no longer eats and has not learnt to walk or talk, yet! Developmental delays are a key part of Dravet Syndrome.

Having a seizure is likened to running a marathon. It has a huge impact on his body, not to mention the effect of the rescue medication (Midazolam) that he is given to stop them. We are keen to do whatever we can to help him fight the effects and increase his strength in order to reduce the impacts.

The donations we have received so far have helped us fund specialist equipment, such as seizure and breathing alarms, chairs and buggies. Our next challenge is how we adapt our house to enable us to care for Toby, this is likely to involve installing a lift and disabled bathroom, neither of which we have room for. Quite a challenge.

The support we receive through Toby’s Trust makes the challenges we face on a daily basis far less scary. Having funds to buy specialist equipment improves our daily lives and takes away an element of stress. We are humbled by how wonderful everyone has been to us.

To donate to Toby’s Trust please click here