Patient Story

Josie and Adeline help others find their match

Two sisters have inspired a surge in stem cell donor registrations, resulting in more second chances at life for people living with blood cancers and disorders.


In Scotland, two sisters, Adeline and Josie, share a bond that goes beyond the usual sibling connections. Both girls were born with Shwachman-Diamond Syndrome (SDS), a rare genetic disorder that poses serious health challenges, including bone marrow failure. Despite their young ages and diagnosis their stories have sparked a wave of positivity and action.

Josie smiling with her sister Adeline
Josie and her sister Adeline, peacefully sleeping together

Inspiring potential lifesavers

Adeline, the elder sister at six, and Josie, her four-year-old companion, have become beacons of hope, not just within their community but across the UK. Their condition, and their family working with DKMS to share Adeline and Josie’s searches for stem cell matches, has prompted hundreds to register as potential donors, offering a lifeline to others in dire need. "Nine people in total have made us aware they were donors for others after signing up for the girls! It’s brilliant, honestly, it feels like we're giving back, it is so amazing!" shares their mother, Steph.

Adeline's journey to a successful transplant involved nearly a two-year wait that resulted in a miraculous match from the stem cell register, giving her a second chance at life in 2021.

The search continues for Josie

Josie lying on a hospital bed

Meanwhile, Josie continues her search for a matching donor. Medical appointments are a reminder of the reality she lives with, yet they do nothing to dampen her spirit. Described by her mother as "a sweet, loving little girl, strong-willed but a free spirit," Josie's zest for life is a powerful reminder of what's at stake. Her favourite activities, messy crafts, and dressing up, along with her daily dance and sing-alongs with Adeline, keep her joyous despite her condition.

Josie and Adeline’s stories are an invitation to become part of something larger than any of us. They’re a call to action to join the ranks of potential stem cell donors; to step forward and be the match that could potentially save the life of a blood cancer patient. For Josie, a match could allow her to enjoy a carefree childhood alongside her siblings.

Join the movement

By registering as a stem cell donor, you could help us continue to change lives, just as Josie and Adeline have inspired so many to do already. Together, we can change lives!

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