The parents of a brave five-year-old boy who suffers from up to 20 seizures a day want to raise awareness about his life limiting condition.
Jack Gilvarry, from Allerton Bywater, suffers from a very rare genetic disorder called FOXG1 and he is one of only 176 people who has the condition in the world. It means he suffers from severe epilepsy and doctors were forced to put him in an induced coma twice this year as they tried to get his fits under control.
His parents, James and Debbie, want to raise awareness about their son’s condition so more research can be carried out to help find a cure.
They hope to raise £5,000 to get a charity registered, which could lead to more research being carried out.