Mum’s plea over charity evening
Fundraiser following death of 18-month-old boy
The mum of an 18-month-old boy who recently passed away from a rare condition is looking for musicians to take part in a fundraiser next month.
Emma Minett is raising money for the Menkes Foundation after the death of her son James in April.
Emma (34) of Eastrea Road, Whittlesey, said doctors in Peterborough told her James was the first person they had ever seen with Menkes Disease - a disorder which causes growth failure and a deterioration of the nervous system.
She said: “He is the first one to have it in Peterborough. They reckon they won’t have another case in 25 years.
“He could not do anything for himself. He could not hold his head up and he was not reaching his milestones. I was told he would never walk or talk.
“He had a peg in his stomach as he could not swallow and he had 50 seizures a day.”
For 15 months following James’ diagnosis, Emma was taking him to Peterborough City Hospital, Addenbrooke’s in Cambridge and the Evelina in London, a specialist children’s hospital.
Staying in London was costly, but the Menkes Foundation helped the family out, which is why Emma is looking to raise money for the charity so it can support other families in her position.
She said: “We were given money towards a day out as a family and hospital stays as well. It was £65 for him to stay in London next to the hospital.
“It’s genetic and there’s nothing they can do until the baby is born to find out if they’ve got it.
“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.”
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 email@example.com.
Emma, who has two other children - Sophia (3) and Regan (12) - admits she is still coming to terms with James’ passing.
She added: “It feels strange. I feel lost. I feel like my arm has been chopped off.
“You would still get the odd cheeky smile out of him.”
Emma Minett with son James