Emma (34) of Eastrea Road, Whittlesey, said doctors in Peterborough told her James was the first person they had ever seen with Menkes Disease #8211; a disorder which causes growth failure and a deterioration of the nervous system.
“I’m hoping to give them money to put towards trials, and I want to help other families who are going through what we went through.”
Emma, who has two other children #8211; Sophia (3) and Regan (12) #8211; admits she is still coming to terms with James’ passing.
“He had a peg in his stomach as he could not swallow and he had 50 seizures a day.”
The fundraiser is due to be held on Friday, September 29 at the Manor Centre in Station Road, Whittlesey, and musicians and people with raffle prizes can contact Emma at firstname.lastname@example.org.