Mum’s plea over char­ity evening

Fundraiser fol­low­ing death of 18-month-old boy

The Peterborough Evening Telegraph - - NEWS - By Joel Lamy Twit­ter: @PTJoelLamy

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 em­maminett@ya­

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

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