Ballykinlar turns out for Faith

Ballykinlar turns out for Faith

11 April 2012 - by BY JOANNE FLEMING

THE people of Ballykinlar came together at the weekend to fundraise for little Faith Tilley — who at just two years-old is waiting for a kidney transplant.

The donor is no problem thanks to mum Lynsey who is a match, but it will involve a trip to Great Ormond Street Hospital where specialist surgeons hope they can help the toddler sooner rather than later.

Faith suffers from the rare Congenital Nephrotic Syndrome, which means her kidneys leak protein. They will eventually have to be removed, but if she waits for surgery in Northern Ireland it could be another five years before she is treated.

“You have to weigh 20 kilos to get an adult’s kidney here,” explained Lynsey. “At Great Ormond Street it is 10 kilos.”

Last year Faith’s supporters helped raise £2,000 for the Northern Ireland Children’s Kidney Fund, and Lynsey said they were delighted to hear the Ballykinlar community had raised over £1,000 through their own fundraiser for Faith. A charity game involving Ballykinlar Rec was well supported and accompanied by a family fun day.

“Although we are living in Downpatrick my husband Aaron is from Ballykinlar,” said Lynsey. “Overall £8,440 has been raised so far, not including Saturday.”

Faith spent the first five-and-a-half months in hospital shortly after her birth. She endured nightly albumen injections to replace the protein she loses in her urine, has been tube fed through her stomach, and having suffered a bleed to the brain had to have a type of pump called a shunt fitted.

One of the side effects of Faith’s condition has also been a loss of appetite, with ‘epo’ shots used to help boost her energy.

A drip is still fitted every night for 10 hours, but according to Lynsey she is making good progress with new medication.

“She is doing really well,” she said. “The first year was really rocky. At hospital we were just completely stressed out. She does not like hospitals, any hospitals.

“They have not said when the transplant will take place, just as soon as they think her body is ready. Hopefully when she is a wee bit older.”

In hospital every four weeks, previous fundraising has helped out with expenses, Lynsey explained.

The Downpatrick mum, who also has two little boys, has extended thanks to all those who have supported the family so far, including friend Naomi Simmons, who helped with the Ballykinlar fundraiser and the members of Ballykinlar Rec.

“The coffee, tea and biscuits raised £250 alone,” she said. “There was also a barbecue and a raffle at the Four Roads. It was well supported and the amount of people who came out and watched was really something.

“Faith loved it and was on the bouncy castle. She was really happy and smiling. She is such a good wee thing.”