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Parents launch fund as girl (3) battles one-in-a-million illness

By Conor Sharkey

Little Daria Gilloway really is one-in-a-million.

A giggling bundle, the Strabane three-year-old is the only child in Northern Ireland with the rare condition Trisomy 9 Mosaic (T9M).

So uncommon is the illness that it affects only five children in the whole of Ireland, and little more than 100 the world over.

Daria's condition means that she cannot talk and can only walk with constant support. This year alone she has been to hospital a dozen times, and more than 100 times in her short life.

T9M means Daria has an extra chromosome in some of the cells in her body. The term 'mosaic' indicates that some cells contain the extra chromosome nine, while others have the normal chromosomal pair.

It means the toddler has health problems including a narrow airway which makes breathing very difficult. Daria requires oxygen every night when she sleeps and often during the day as well. She cannot chew food, so swallowing is difficult. Because of a severe reflux, her problems eating cause problems with her lungs.

Every day is a struggle for Daria and for her parents, Julie and Keith. Determined, though, to give their little girl the best chance in life, the couple are about to embark on a drive to raise funds for other families living with T9M and to raise awareness of the condition.

Julie said: "Daria wasn't diagnosed until she was 22 months and none of the doctors had seen the condition before. Up until recently we thought she was the only child in Ireland, and it is only in the last 18 months we have realised there are actually five children in the country with T9M.

"Because so little information was available, we turned to the internet and even there, there wasn't a lot of help. Then we found a support group on Facebook and it has been an absolute rock for us. I don't know how we would have coped without it."

But despite her health problems, Daria remains a bundle of fun. "She is a real livewire," dad Keith said. "She struggles to do all the things everyone else takes for granted but she's so determined.

"If she had shown the suffering she has been through, it would have been a lot more painful for us to see, but she lies down to nothing. It's a real inspiration to us."

Each case of T9M is different. Cases of children developing curvatures of the spine, kidney problems and liver difficulties have all been reported. But with no two cases the same, it is virtually impossible for the Ballycolman couple to predict what the future holds.

"We said that when Daria was born the guidebooks went out the window and she started writing her own," Julia said.

"There is no set path for T9M and it is just about dealing with each problem as it arises. There is lots for us to be on the lookout for but we really have no idea what the future holds."

Next month Daria will embark on arguably her biggest adventure yet when she starts attending Knockavoe Nursery school.

The couple recently travelled to Liverpool to meet other families coping with T9M.

Julia said: "To see children who look like our daughter and who act the same, it was a big thing for us to know that we aren't alone."

"The money we raise will be vital to so many families but it isn't just about money, but about raising awareness of T9M, too. We want to give Daria the best quality of life and all we can do is hope every day that things will turn out for the best," Julie added.

Information on fundraising is available on the T9M Trust Daria and Friends Facebook page along with details of how to donate

Belfast Telegraph


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