Josie from Alness and her sister Adeline have a rare and serious genetic condition. Adeline had a stem cell transplant, and now the family are searching for a stem cell donor for Josie, so she can also have a second chance at life.
DKMS will be at the Bridge of Allan Games on 3 August and Black Isle show on 7 August adding people to the stem cell register
Josie Davidson is 6 and her older sister Adeline is 8. Sadly, the two sisters from Alness in Ross and Cromarty share a rare and life-threatening diagnosis.
Both girls were born with Shwachman-Diamond Syndrome (SDS), a rare genetic disorder that poses serious health challenges, including bone marrow failure. Both girls were told that they would need a stem cell transplant from a stranger to give them the best possible chance.
Their mother, Steph, explains, “Our eldest daughter, Adeline, was diagnosed in February 2019, and it was a huge shock. At that time, I was also 6 months pregnant with twins.
“It took almost two years for Adeline to have her life-saving transplant, and at times, we thought it was never going to happen. We thought it was over until a new person popped up on the register as a match for Addie – that person gave her a new life.
“In that long wait, of course, the twins were born. At around 6 months old, I had a strong feeling that Josie had the same condition. I just thought, ‘We have to go through it all again.’
“At the moment, there is no match for Josie on the register, so we’re still searching. Because she is so fragile and her condition is so rare, it is so important that we find a perfect match for her.
“It’s a waiting game really – we either wait for that perfect match or we need to wait until she gets poorly, which we don’t want, so the more people on the register, the more likely it is that she’ll get her second chance too.”
Josie’s illness currently requires weekly appointments with many different medical professionals. But a perfect stem cell match could give Josie the chance to enjoy a carefree childhood with her twin brother, Jude, and older sister Adeline.
“Josie is a sweet, loving little girl, strong-willed but a free spirit,” explains Steph. “She loves dressing up, playing games, and doing crafts and activities – the messier, the better for Josie!
“She adores her big sister, and they sing and dance together daily. She doesn’t let her condition stop her. She just loves life and people.”
The family is working closely with blood cancer charity, DKMS, to encourage more people to join the stem cell register. Joining the DKMS stem cell register is a quick and easy process involving some mouth swabs, which takes just a few minutes.
There’s an urgent need for more people to sign up as every 14 minutes, someone in the UK is diagnosed with blood cancer.
Anyone aged 17 – 55 years who is in general good health can register. Thousands of people have already joined the register in response to Josie and Adeline’s story, with some of them being called forward to give other patients a second chance at life. However, Josie is still waiting on her match.
The DKMS Scotland Volunteer Hub will be at the Bridge of Allan Games on 3 August and the Black Isle Show on 7 August and will be helping members of the public to join the stem cell register.
Chris Bain is a stem cell donor from Aberdeenshire and now leads the Scotland volunteer hub for DKMS. He says, “For patients like Josie, stem cell donors offer a crucial second chance.
“The fact that her sister is now doing so well shows the life-changing impact of the stem cell donor register, and having been through this process from the donor side, I know just how easy it is.
“Only a third of patients find a match in their family, so joining the register means that you could give someone more time with the people they love, and potentially save a life.
“We’ll be at the Bridge of Allan Games and the Black Isle Show signing people up to the register, so come say hello and get signed up! It just takes a few minutes – we’ll be there to answer any questions that you have”.
Things you didn’t know about blood cancer:
- Every 14 minutes, someone in the UK is diagnosed with blood cancer.
- Blood cancers are the third most common cause of cancer death in the UK.
- Every year, nearly 13,000 people die from blood cancer in the UK.
- At any one time there are around 2,000 people in the UK in need of a stem cell transplant.
