Family’s wish as children fight illness suffered by no-one else

A MOTHER and father whose children are the only youngsters in the world to suffer from a rare growth condition yesterday said their New Year wish was to see their baby finally come home.

Charlotte James gave birth to Iona James-Bruce nine months ago.

But the baby and her two-and-a-half-year-old brother Findlay were born with a genetic defect which means they require a vast amount of calories in order to grow.

Findlay weighs just 16lb 8oz and is fed through a tube in his stomach.

Iona has a more severe form of the condition and has been battling a string of health problems in hospital since birth.

The youngsters, from Hatton, near Peterhead, Aberdeenshire, are understood to be the only children to suffer from chromosomal abnormality Trisomy 12Q.

Trisomy refers to the presence of three copies, instead of the normal two, of a particular chromosome.

Chromosome abnormalities occur in one of 160 live births.

Parents Charlotte, 25, and David Bruce, 31, made repeated trips to Aberdeen’s Children’s Hospital following Findlay’s birth. He was often sick up to 100 times a day and needs splints on his legs to walk. But after Iona was born weighing just 3lb 5oz, the couple had to move into the hospital’s parents’ quarters full-time.

Iona suffered collapsed lungs, brain haemorrhages and has to sleep in a specially heated cot to maintain her body temperature.

Now aged 35 weeks, she still weighs only 6lb 8oz and the couple have just one wish for for 2012 – to see them all together at home as a family.

Ms James, who cares for the children full-time, said: “For the next year, we would like Iona to get well enough to come home and to get on to foods.

“With Findlay, we would like him to get stronger and develop his independent mobility with the aid of a walker or wheelchair.”

But despite their daily battles, the parents say the siblings have proved themselves to be “little fighters”.

Ms added: “Iona has had so many issues. She is so small but she is a fighter.

“At least twice she has been lucky to survive – once with her lung issues and once when an infection set in. It was really touch and go and she has come through both so strongly. For being so tiny, she is feisty.”

Instrument engineer Mr Bruce added: “Findlay is the oldest kid with it and we don’t know what his future is.

“It could be in five to ten years time he starts to catch up mentally and physically with other children. Or, in ten years he might not be here.

“We have to make the most of each day as it comes.

“If you look at Findlay you would see a smiley, happy little boy. Children can have big problems but lead happy lives.”