Parents of a toddler with a rare blood disorder are in dire need looking for a perfect stem cell match in a bid to save their daughter’s life.
Evie and her family’s world was turned upside down in March this year when what they initially thought was a heat rash turned out to be two rare and serious diseases.
Her best chance of survival is to have a blood stem cell donation from a stranger. But Evie’s mixed heritage with Mauritian, Sri Lankan and South Indian roots makes the match difficult to find.
Her father, Daven Sanassy, said it was difficult learning that due to their family’s heritage finding a perfect match for Evie is much less likely and urged people from South Asian backgrounds to sign up for the stem cell register.
Evie is just 15 months old. She’s a cheerful baby despite having spent a fair proportion of her life in hospital.
According DKMS, after developing prolonged fever and what looked like a heat rash on a family trip to Mauritius in early October 2021, she was initially assumed to have had Kawasaki disease. Having spent two weeks in South Africa, where she had been air-lifted for better diagnostic treatment, her condition stabilised and she was able to return to the UK.
Then, following a severe flare-up in December last year, Evelina Children’s Hospital identified Evie’s illness as systemic juvenile idiopathic arthritis (SJIA), also known as Still’s disease. By March of this year, doctors at Great Ormond Street Hospital (GOSH), where she is currently being treated, also diagnosed a related life-threatening complication, macrophage activation syndrome (MAS). With standard treatment not working, Evie is undergoing rounds of chemotherapy to keep her rare disease under control.
The combination of severe MAS with Still’s disease means her doctors are now proposing a stem cell transplant to cure her MAS. Evie is not able to interact with other children because of the risk of infection. She loves playing with her parents and her play worker at GOSH, Katie. She likes Sesame Street, unicorns and lions.
As a result of living in and out of hospitals, Evie even enjoys playing with medical equipment. According to her nurses, Evie is the only child of her age who genuinely enjoys having her blood pressure taken.
Evie’s dad Daven says, “It’s really important for more people to be on the blood stem cell register, especially those from non-European backgrounds, who are currently under-represented. It is vitally important for people to realise there is nothing scary about a stem cell donation – the process is often similar to giving blood.
“Saving a child’s life with a simple blood stem cell donation is the most amazing gift that anyone can give.” he continues.
So if you come from the South Asian background, aged between 17-55 and in generally good health, you can sign up as a potential blood stem cell donor by clicking HERE.
Perhaps you are the one who can save this little girl’s life.
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