Mum begs others to get tested as Ava (3) misses out of second life-saving transplant
Published 18/10/2016 | 13:53
A mother is "begging" people to get tested for stem cell donation after her three-year-old daughter lost out on a life-saving transplant for the second time in four months.
Ava Stark was just 24 hours from going to hospital to prepare for the operation when her family was told the donor had to pull out for medical reasons.
Now, her mother Marie is urging people to have a simple test to find out if they can help save her daughter's life.
The youngster, from Lochgelly in Scotland has a rare blood disorder and will die without a stem cell transplant, but the donor has to be a perfect match with 10 out of 10 identical genetic markers.
A previous search of the 25 million donors on the global register following Ava's diagnosis in April with inherited bone marrow failure revealed just one match.
The donor agreed to help Ava with the operation scheduled for July but was later unable to go ahead.
The family were relieved when a second match was found and were due to take Ava to hospital in Glasgow on Tuesday to get ready for her transplant, but were "devastated" when doctors said the new donor had to pull out just hours before due to medical reasons.
Ms Stark, 33, told Press Association: "It was so devastating. We were watching Peppa Pig and my phone rang and I saw it was a Glasgow number.
"I thought they were just phoning to see how we were getting on but then they said, 'I've got bad news'.
"I said, 'Please don't tell me'. I couldn't believe it."
The donor system is anonymous and the regulations do not enable Ms Stark to find out any more information behind the reason for the transplant falling through.
The hospital is checking the registry again to try to find a third 10 out of 10 match and are going to contact the family within 48 hours. Until then, Ava is being kept in isolation at home.
The strict anti-infection conditions mean the toddler cannot even kiss her loved ones but her mother revealed the youngster remains upbeat.
She said: "She's fine, she's crazy. She doesn't have a care in the world. She's just happy. She saw us crying yesterday and she said to me, 'Mum, don't cry' and she asked if she could give us a kiss because we haven't been able to do that because of the infection control."
Ava's current treatment consists of a platelet transplant every week and she gets a blood transplant every three weeks, but medical staff are unable to say how long this will keep her alive unless she gets a stem cell transplant.
Ms Stark said: "I ask them all the time and I always get told the same thing, that everybody's different. I know eventually everybody will start to fight against it and develop antibodies against the blood and platelet transplants.
"A stem cell transplant gives Ava hope. It gives her another chance. If her body accepts, it will start doing what it should be doing just now.
"I don't even know if there is another match. I'm literally begging everybody to get tested. Even if it doesn't save Ava's life, it could save somebody else's little boy or girl."
Any relatively healthy adult aged between 16 and 30 can sign up for the painless test through the Anthony Nolan Trust while older donors can register through Delete Blood Cancer, which takes people aged 17-55.