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Alness mother Steph Davidson makes fresh appeal after daughters Adeline and Josie are both diagnosed with rare genetic condition


By Louise Glen

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Steph Davidson has long campaigned for people to sign up as potential bone marrow donors.
Steph Davidson has long campaigned for people to sign up as potential bone marrow donors.

A mother has made a fresh appeal for people to give blood and sign up to be bone marrow donors after it emerged that two of her young daughters have a rare genetic condition.

Steph Davidson, from Alness, has fought hard in recent years to get four-year-old daughter Adeline the bone marrow transplant she needed after being diagnosed with a rare form of blood cancer.

It has now emerged that both she and her sister Josie (2) are suffering from Shwachman-Diamond syndrome (SDS) and carry a rare genetic mutation.

Adeline is currently in Glasgow continuing to recover from the bone marrow transplant she finally received in April.

Mrs Davidson (27) said: “While I would have loved it not to be the case, I knew that Josie had the same condition.

“I was told a number of times by medical professionals that it would be unlikely, but I just knew there were similarities in Josie’s symptoms to Adeline’s condition.

“I was suspicious and curious to find out, and I felt quite judged, as if I was an over-anxious parent.

“Josie is smaller for her age and whatever we do she does not put on weight.

Adeline Davidson with dad Jordan – both her and younger sister Josie have now been diagnosed with a rare genetic condition.
Adeline Davidson with dad Jordan – both her and younger sister Josie have now been diagnosed with a rare genetic condition.

“She bruises easily without reason and she had delayed speech – all of these things didn’t add up to me, and I wanted to find out why.

“We eventually got genetic tests and it was discovered that Josie has a genetic mutation in one of her cells.

“Adeline has a mutation in two of her cells.

“Sadly, both mutations have similar symptoms and it is possible that Josie will also need a bone marrow transplant.”

While the family – including dad Jordan (29) and Josie’s twin sister Jude – don’t know exactly what is in store for Josie, her bloods are being tested for tissue typing, and tests are being done on her physical symptoms.

“What people don’t realise is that, alongside the bone marrow treatment, it is blood transfusions that are keeping children alive,” Mrs Davidson said.

“So please give blood and please sign up to the bone marrow registers – testing is quick and easy and can be done at home.

“It genuinely saves children’s lives.”

She added: “Adeline is doing well, and we hope that everything is going in the right direction. I can never thank those people who have signed up to be bone marrow donors enough.

“Hopefully for Adeline things will continue to improve and she will have her immune system back up after the bone marrow surgery. She is an incredible wee girl. I am really thankful for the staff and the people who have constantly been supporting us.

“Adeline will hopefully have a full year at nursery after the summer holidays and will start school the following year. It is lovely to be able to say that.

“But of course the journey is just beginning for Josie, and if it comes to it we will need to look again for a match for bone marrow for her.

“I think we were shocked when we were looking for a match for Adeline that there were so few people registered in the Highlands, so it is great that this is beginning to change.”


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