Parents’ plea for child organ donors as two-year-old daughter battles rare lung condition

The parents of a two-year-old girl who needs a lung transplant have made a desperate plea for families to register their children as organ donors.

Little Ava Murray was born with a lung disorder that causes breathing problems. She needs to be given oxygen through a tube to enable her to breathe.

The toddler, who has a twin brother called Aiden, is currently undergoing assessments and will eventually need a double lung transplant. But her family have been told if she gets the surgery now it will be a very long recovery – with a potential life span of two years.

‘We need a child to die for our child to survive’

If her condition doesn’t deteriorate, medics could hold off operating until she is five when she could expect a better outcome and possibly live until she is a teenager.

Parents Tamara Chalmers, 26, and 30-year-old dad Robert Murray have now appealed for other parents to consider registering their children as donors.

“We just want people to be aware. We obviously need a child to die for our child to survive, and that’s a reality,” Tamara said.

“Not many people donate their children’s organs which I totally understand but I feel you don’t really need them if you’re not here. Donating a child’s organs could give nine other children a chance to live.

“If this is the only thing we can do for our daughter we’re going to do it.”

Ava has a rare condition with no cure

Ava has spent much of her short life in hospital. She was taken to Aberdeen Royal Infirmary four weeks after she was born when her concerned parents noticed she was failing to thrive.

Tests carried out at the Royal Hospital for Children in Glasgow later revealed she had  the rare condition Surfactant protein C deficiency.

This means she has abnormalities in the composition of surfactant in her body, a mixture of fats and proteins that line the lung tissue to make breathing easy.

It is a rare condition for young children to have, with no cure, and her parents have been told she is only likely to live three years without a transplant.

‘I think I’m past crying now; I’m just numb’

Tamara said: “We’ve been in and out of hospital for the majority of her life.

“There was a point when she was in for about 80 days because she was so malnourished because of her lungs, we were told she was going to die of starvation.

“Her breathing was using up a lot of calories so she wasn’t getting enough. It was scary.

“I think I’m past the crying now; I think I’ve cried so much I’m just numb now. There comes a point when you wonder if you’re even living through this – is it even real?”

Tamara, also mum to nine-year-old Lucy, and her family have faced a difficult two years coping with Ava’s illness.

The family spend much of their time at home because Ava needs oxygen 24/7 to help her breathe and relies on using canisters when they leave their Peterhead home.

An assessment carried out in April at the Freeman Hospital in Newcastle showed there is not yet an urgent need for Ava to go on the transplant list.

‘We can’t predict anything’

Further assessments will be carried out and Ava’s parents have been advised to keep an eye out for any changes in her condition.

Tamara, who is registered as a donor, said: “They’re going to reassess her for a lung transplant this month but there’s been no changes. But we don’t know, we can’t predict anything.

“There’s telltale signs to show if this disease is progressing, she could lose weight, start being more sleepy or her oxygen needs could go up.

“She’s thriving well just now, she’s a sassy two-year-old but eventually she is going to deteriorate and we’re going to have to watch things escalate and get worse.

“It could be next month that she starts going downhill.”

Dad Robert, who works at Davidsons Marine and Industrial Painters in Peterhead, said his employers had been very supportive.

He said: “They’ve supported me as if we were family and helped us out a lot. I want to thank them for all their support.”

And he also urged families to consider becoming donors. He said: “It’s so important to us. Everybody should think about doing it.

“It’s the worst thing that can ever happen to a parent, you just want the best for your kids. If you could find something to help them you would do it, that’s why we’re asking people to become donors to help save another child if possible.”

New legislation requiring adults to opt-out of being an organ donor came into force in Scotland earlier this year.

The new law, called The Human Tissue (Authorisation) (Scotland) Act 2019, means donations may proceed where adults aged 16 and over are not known to have any objection to it.

Parents and guardians can also register their children, and children over the age of 12 can register themselves.

More information about registering your child can be found by visiting www.organdonationscotland.org