We are very grateful for you taking the time to visit and read Josh’s story and our JustGiving page thank you.
We as a family have decided to setup this page in the loving memory of our son Josh due to his tragic death at 5week old, Josh was sadly taken away from us after a 4week battle with this tragic illness. The Illness was a result of being born with Early Myoclonic Encephalopathy (Ohtahara Syndrome - Infantile Epilepsy) from which there is no known cure or detection (before birth) in place or specific causes and treatments, the only known method of detection is during early development after birth.
Statistically we were told Josh was one in a million due to being born with his condition, however infants developing epilepsy after birth is on the rise and will affect the life of both the child and their family. We felt that after the care/ support that our family were given from the neurology team at the Royal Hospital for sick children headed by Professor Zuberi, that we wanted to give something back in the memory of our beloved one in a million son Josh in the hope that his short precious life may create a legacy by helping impact and improve things for others making a difference to help prevent other families who may face the same heartache and pain we have had to endure.
All donations will be greatly appreciated and 100% will be donated to our chosen charity on behalf of our chosen researcher Prof Zuberi (see below link for more specific details and importance).
Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.