Baby whose nosebleeds turned out to be deadly condition saved by stranger – Mirror Online

By daniellenierenberg

A baby whose nose bleed turned out to be a one-in-a-million disease has had his life saved by a complete stranger.

Tiny Daniel McAvoy's parents were told he would die unless he received the stem cell transplant before he turned two.

The infant was diagnosed with Wiskott-Aldrich syndrome, a rare blood disorder, when he was just ten weeks old.

Mum Georgie, 30, and dad Andrew, 37, noticed something wasnt right with their newborn when he suffered chronic nosebleeds and passed blood in his nappies.

But after desperately searching for the right donor for more than a year, Daniel has now had the transplant and is a smiley, happy tot back at home.

"Hes eating and playing and I really hope it continues that way. Im just so proud of him, hes done amazing," Georgie, of Benwick, Cambridgeshire, said today.

"There were plenty of times we thought he would die - we even had him christened in hospital because things werent looking great.

"He has the most severe level of the syndrome so from day one we were told he would need a transplant to replace his faulty immune system and defective cells and the procedure took place.

Doctors warned that he would go down quickly after the transplant but he hasnt and they're shocked."

When Daniel was first referred to hospital at three weeks old, medics first thought he had leukaemia, but after recovering from sepsis, he was discharged while they continued to look into the worrying case.

He was then rushed back to hospital at ten weeks old in July last year.

Georgie, who is a stay-at-home-mum, said: The nosebleeds went from nothing to doctors then telling us that he needed a bone marrow transplant to save his life.

He was diagnosed with Wiskott-Aldrich Syndrome in July 2019, which affects only one in a million boys and was the cause of the horrendous bleeds.

I never knew I was a carrier of the gene that causes it, so as a mum I felt pretty guilty that Id given him it."

The newborn woke up in May 2019 with a crust of blood on his nostril, which his parents thought was strange but a health visitor suggested it could be from a scratch.

But the tot began passing blood in vomit and nappies, and a GP then referred him to the hospital, where tests found he had a low platelet count that caused the bleeding.

Following a platelet transfusion to help stabilise him, Daniels parents were told he contracted sepsis but could also have meningitis and a rare type of leukaemia - so he was sent to a cancer ward.

Various procedures ruled out leukemia and out of nowhere the tiny tot began to get well again, so doctors discharged him.

Georgie added: Something still didnt sit right with me but some time later he had an unrelated hernia which needed an operation, and began having nose bleeds again.

I suggested that a doctor needed to look at the bigger picture because I knew there was something wrong with my baby.

The paediatrician looked back at all of Daniels notes and thought it was Wiskott-Aldrich Syndrome, which Id never heard of before, then after the operation to remove the hernia the haematologist agreed.

Within 24 hours of him being tested for this he was pretty much diagnosed and then doctors were speaking to us about bone marrow transplants - it all went very quickly.

In Daniels case, hes had a lot of bleeding problems - he bleeds from his gut, nose, eyes and mouth - so doctors were concerned about a catastrophic bleed that would kill him.

Wiskott-Aldrich Syndrome is a primary immunodeficiency which caused Daniels bleeding and left him prone to infections such as sepsis and also cancer.

He began having antibody infusions once a week as charities such as DKMS ran their global register to find a life-saving stem cell donor for Daniel, and a match was found in September 2019.

Georgie said: We had a terrifying 12 week wait but we were really fortunate that it was quick before a match was found.

His transplant then got delayed three times - the first and second times were because he wasnt well enough, and the third time was due to coronavirus.

I just went into panic mode because I thought he was going to die from this.

But Daniels transplant finally took place after a week-long chemo and immunotherapy course.

Were taking it day by day - if its successful, within two years he should be a healthy little boy.

Its all been a mixture of feelings - its really nice how hes so young that he wont remember how awful this all is but at the same time, sitting there watching your child have chemotherapy is the most heartbreaking thing in the world.

I would do anything to switch places with him.

Now that baby Daniel has been given another shot at life, his family are now calling out for others to join the transplant registers, as four out of ten patients arent lucky enough to get a match.

Georgie added: Its incredible how an anonymous donor saved Daniels life - without that person there would be no Daniel, they are all we needed to give him a second chance at life.

Its so simple and easy to sign up, and by doing so, you could save a babys life.

If you are aged between 17 and 55 and in general good health take the first step to register as a blood stem cell donor by registering for your home swab kit at http://www.dkms.org.uk.

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Baby whose nosebleeds turned out to be deadly condition saved by stranger - Mirror Online

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categoriaBone Marrow Stem Cells commentoComments Off on Baby whose nosebleeds turned out to be deadly condition saved by stranger – Mirror Online | dataOctober 2nd, 2020

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