My sweet little nephew Reilly is only 5 years old and he has been coping with epilepsy for the last 2 years. Reilly‘s whole brain is affected so he cannot have surgery to cure it. He was diagnosed with myoclonic atonic epilepsy age 3. Reilly suffers daily with up to 40 myoclonic jerks, where he hits his face and head resulting in cuts and bruises. This is the reason he wears his specialised helmet (as seen in his picture). He also suffers drop seizures where he just collapses and falls to the floor unconscious and very recently he started having atonic clonic seizures. This is where his whole body shakes and he stops breathing.

Last sunday my family were awoken by screams for help from my other nephew Leo, Reilly‘s 8 year old brother, he woke up to Reilly having his first full on convulsing fit. Reilly was struggling to breathe and needed urgent medical help, an ambulance was called and he was taken to hospital. It‘s very lucky that his brother was sleeping by his side, as normally Reilly sleeps alone in his own room. As you can imagine it’s virtually impossible for Reilly to be watched 24/7, especially at night. However after some research we have found some specialised equipment that can alert his mum or dad when he‘s about to have a seizure, and could save his life one day.

Unfortunately the equipment is expensive and my family need a little help to buy it. Reilly is already registered with charities that do offer help but sadly there is a year+ waiting list and we do not want to risk waiting that long.

There are two items we would like to get him one is a anti suffocation pillow. It‘s special as it has a built in wall pocket of air, which doesn’t go down even when laid upon. This is in case he is sleeping on his front, so it will allow him to still get oxygen through the pillow if he‘s struggling to breathe. The second piece of equipment is called Brio, it’s an epileptic seizure alarm wristband. This is worn at night so it can monitor Reilly‘s heart rate and will detect when he’s about to have an attack, it then sets off a sounding alarm, alerting his mum and dad.

My family and I love Reilly so much and pray everyday that he will get better, but sadly there is no immediate cure for his condition. All we can do is comfort him and make sure he is not alone at night whilst having a seizure.

Any amount no matter how small you can spare to donate, even if it is just £1 will be so appreciated. Even if you are unable to donate please share my nephews story and help me spread the word further so that we can help make a difference to his young life. I’m so grateful for any help, thank you so much for reading.