Grandma's cold could kill Luke-John

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Grandma's cold could kill Luke-John
Friday, 21 November 2008

Nickola Copley with son Luke-John. Linda Upton looks on in a picture taken two weeks ago. (Magnus Andersson)


By Lawrence Conway

A SIMPLE cold means a grandma who helps care for her terminally ill grandson has spent the week hiding from him, terrified she might pass on the infection and kill him.

Luke-John Copley is cared for round the clock by Linda Upton and her daughter Nickola Copley, 30, at their small Kennington council flat.

Luke-John’s weakened state means catching a common cold could trigger his death.

The five-year-old had been due to have the Synagis vaccine that would help him fight off common infections. But the treatment was cancelled and the family don’t know why.

Mrs Upton, 52, said: “I’m coming down with a cough and a cold. “I’m going to have to stay in my bedroom because I don’t dare go near Luke-John.

“This is a direct result of being denied the vaccine.

“We’ve been told the doctors treating Luke-John changed their minds because they didn’t realise his age.

"The vaccine is recommended for under-twos.

“But Luke-John is already on medications that are not recommended for people his age.

"The fact is he is so sick, we are doing anything we can to extend his life.”

Luke-John has Down’s syndrome, two holes in his heart, the rare genetic defect Williams syndrome, complex learning needs and other conditions.

On September 3, Lambeth PCT wrote to the family approving the treatment, but just six days later wrote saying the treatment would no longer go ahead.

Miss Copley said: “I had recommendations as recently as October this year from the specialists saying my son needs the treatment, despite his age.”

A Lambeth PCT spokesman said specialist doctors involved had changed their minds about providing the care, but he could provide no reason for the about face.

After an exclusive story about Luke-John in the South London Press last month, Lambeth PCT boss Kevin Barton said the decision was not made to save cash.

On Wednesday, Lambeth PCT medical director Dr Shera Chok said: “Doctors agree they cannot recommend Synagis for Luke-John because there is currently insufficient clinical evidence to recommend its use in children over the age of two.

“If his doctors change their decision and recommend the vaccine for Luke-John, we will fund it.”

Luke-John’s consultants Dr Shakeel Quereshi, Dr Ingram Schulze-Neick and his GP Dr Mark Ashworth failed to return calls at the time of going to press.

Email: lawrence.conway@slp.co.uk