Harrogate toddler’s battle with rare kidney disorder

NADV 1405131AM1 Glyn Harland. Glyn Harland with Carole Hare, Sammi Ramsey and her children Harry Mason and Mia Mason.  (1405131AM1)
NADV 1405131AM1 Glyn Harland. Glyn Harland with Carole Hare, Sammi Ramsey and her children Harry Mason and Mia Mason. (1405131AM1)

Young Mia Mason was born with a rare kidney disorder. The Harrogate toddler, now two-and-a-half, can’t retain proteins and she hasn’t grown since her first birthday.

She has been told she must have a transplant before Christmas this year and her parents are now waiting for test results to see if they can be the ones to help her.

“Before Mia was born, I tried not to think about things like this,” said mum Sammi Ramsey, 23. “You don’t, until it happens to you. And certainly I never thought it would happen to us.

“I always said I wouldn’t donate my organs. Now it’s completely different. Signing up to the Organ Donor Register should be opt out, not opt in. After all, you can’t take them with when you when you go.”

Toddler Mia suffers from an inherited disorder called congenital nephrotic syndrome, which means her body leaks protein and can become swollen. It causes scarring on her kidneys and, initially, her family were told she might not survive past six months.

But, with a diagnosis, regular infusions at Leeds Children’s Hospital, and potenital for a kidney transplant, her family are hopeful that she can now go on to lead a normal life.

“There’s no treatment for it,” said her mum Sammi, who also has a little boy, 18-month-old Harry. “She will always have it. But she should be able to live life to the full.”

The family knew something was wrong soon after Mia was born.

“She was really small,” said her mum. “She wasn’t feeding. She wouldn’t wake up. The doctors thought she had a virus. Then meningitis.

“Then she started to swell up. They gave us eye drops. Then they said she might be allergic to the eye drops.

“Eventually she was admitted to hospital. And it was one nurse, asking if she was always so puffy, that made the breakthrough. I’d always thought it was normal.”

Mia was sent for specialist tests in Leeds, and had to go for infusions six days a week. That has recently dropped down to two or three days a week, but Mia is still in need of a transplant.

“She doesn’t eat. She only drinks milk,” said her mum. “She hasn’t grown now for 18 months. She’s in chronic kidney failure. Her kidneys are failing right now.

“They gave her 12 months at Christmas, and said she needs a donor before then.”

Her parents, Sammi and dad Michael Mason, 28, underwent tests two weeks ago and are waiting to hear if they can be live donors.

“If we’re not a match she will have to go on the donor list,” said Sammi. “It’s a long process, but it’s great that I can do this. Her life will be completely different. She will be able to grow and develop as normal. It’s just waiting now, to see what happens.”

Mia’s family are now backing the Advertiser donor campaign, calling on people to sign up and help others like Mia.

“We are all on the donor list now,” said grandmother Carol. “You never know when you will need it. And it should be opt out - not opt in - to sign up. When your loved one dies, you’re not in the right frame of mind to make that decision.”

The family is now determined to raise money for the unit at Leeds Children’s Hospital which has helped Mia, and have raised nearly £7,000 now through coffee mornings and sponsored runs.

Carol’s partner Glyn is to take part in further fundraising this weekend, braving the Great North Swim tomorrow at Lake Windermere.

And, at the suggestion of Glyn’s grandson Ryan, a student at Ashville College, the Skylarks team in the Knaresborough Bed Race is to donate to the cause.And they have invited Mia and Ryan to join them in Saturday’s parade.

“Signing up to the register, and donating you organs, is about leaving something when you’re gone,” said Glyn. “It’s giving someone life.”

Donate via www.justgiving.com/glyn-harland or www.justgiving.com/Skylarksbedrace