Parents stunned as transplant appeal for little Olly (3) crashes hospital’s donor phone line

Dionne and Neil Cartmill’s son Olly (3) urgently needs a kidney transplant in order to save his life after being diagnosed with a condition so rare that it is known only by a collection of letters and numbers – TTC21B.

The Co Armagh couple’s younger daughter Etta – just five months old – has also been diagnosed with the condition and will require a transplant when she is older, while doctors have warned that Olly will need a transplant as soon as possible.

After she appealed for help finding a donor on Facebook, Mrs Cartmill then had to post a second message with an email address after calls to Belfast City Hospital’s donor line overwhelmed the system.

"It felt brilliant, we were not expecting this response at all. We’re completely shocked; the support of people out there is amazing, my phone hasn’t stopped,” she told the Belfast Telegraph.

"We were just thinking we might get the odd one or two but the support has been crazy, people I don’t even know are messaging me.

"I’ve got it into my head now that he’s going to be getting one at the end of the month, but it’s obviously not going to be that fast.”

The couple’s situation has been made more complicated due to both their children suffering from the rare condition, which causes renal failure and liver disease.

“The reason they don’t want me or Neil going first is because we have the two sick children and they need us to look after them,” said Dionne.

"They don’t usually look for a match at Etta’s age, but they have done just because we have the two. If I was a match for Olly, but found out down the line that I was a better match for Etta, they would prefer to keep me for her.

"Olly is going to be the smallest child in Northern Ireland to be transplanted. You have to be 15kg and he’s only about 12.5kg at the minute.

"Etta had a rough start; because of the volumes she needed for her kidney and liver disease, she had to get nearly a litre of fluids into her.

"She had to get a tube into her stomach and they tried to operate, but it didn’t go well; she was left with a hole in her stomach and we can’t really use her stomach. She only got formally discharged yesterday from the end of January and is fed through a GI (gastrostomy) tube 20 hours a day.”

Years of prolonged dialysis has also taken its toll on Olly, with the toddler left in pain and suffering from fatigue.

"Olly is very smart, he’s obsessed with colours, loves his ABCs and singing and dancing – all the stuff children love to do,” said Dionne.

"We’re up a couple of times a week with him because he has to be monitored very closely for his levels and blood pressure. The child is exhausted, you can see he is struggling.

"He would have had an interest in playing and going outside, but now he doesn’t want to leave the house that much. When you’re on dialysis as long as he has, we’ve been told that it does take its toll on you, and the fact he’s not getting nutrition and water means he’s not getting the energy.”

Former MLA Jo-Anne Dobson is NI Ambassador for Kidney Care UK and has developed a close bond with Olly’s mum Dionne after the toddler was the face of their national Christmas campaign.

"I have been very proud to get to know this family so well since meeting them in the Renal Unit at the Royal Belfast Hospital for Sick Children last year,” she said.

"He is such a beautiful child and journey with kidney disease so closely mirrors my own with my son Mark. As mothers we will do anything to help our children and I will continue to be there to support her and Neil as they make this impassioned and important plea.

"At Kidney Care UK, we are proud to support people, children and adults, across Northern Ireland who live each day with kidney disease.

"It‘s the real human stories which can move mountains and the affection which is being shown right across Northern Ireland for Olly and his wonderful parents, Dionne and Neil, and his baby sister Etta, is truly heartwarming.”

The surge in support has given the Cartmill family hope that they will be able to find donors for their children.

"Out of all these people, we just need one. You are asking people for a vital organ and the fact that so many have come forward is absolutely crazy,” said Dionne.

"It would be completely life-changing for Olly. We’re left trying to find a donor to save his life.”

Anyone who is in a position to help Olly is asked to contact 028 95 043 872 between the hours of 9am - 5pm Monday - Friday and reference Olly Cartmill as the donor recipient, or email donatelife@belfasttrust.hscni.net providing your name, address, telephone number, email address, date of birth and GP details.