Josie's story
Josie is a sweet, loving little girl, strong-willed with a free spirit. She loves 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 loves life and people: everyone gets a ‘hiya’ and a big smile.
As a baby, Josie was not only smaller than average, but her development was also slower than expected. At eleven months old, she was still not sitting nor able to hold her own head up, unaided.
Inherited blood disorder
Steph, her mum, instinctively knew there was a chance that Josie had inherited a blood disorder, a very rare and serious congenital disease, like her other daughter, Adeline.
Fast forward a few years, and, just as Adeline began receiving treatment for the disorder, Josie was officially diagnosed with it too. Steph says: “This situation feels like we are closing one chapter in our lives, yet cannot fully close the book”.
Years of battling ill health and hospital attendance began for the family of five, mum Steph, dad Jordan, Adeline, Josie and her twin brother Jude. Josie has routine blood tests and bone marrow analysis. She remains behind developmentally, all due to the condition which includes issues with gaining weight, hypermobility and bowel issues. The stream of doctors is endless; orthopaedics, orthotics, dieticians and gastroenterologists – practically every medical department possible is involved in Josie’s care.
Looking for the perfect donor
Josie is in a very fragile state and needs a bone marrow transplant. Her condition is so rare that nothing short of perfect will do for her transplant, she must have a 10/10 match. In fact, her condition could worsen, becoming cancerous, as a result of a less-than-perfect match.
Could you be Josie's perfect match?
For now, Josie remains stable despite the abnormal cells being produced by her bone marrow. But she desperately needs a stem cell donor. Could it be you?
If you’re aged 17-55 and in general good health, please consider joining the register by clicking the red button below. You may be the perfect match Josie needs.