Urgent search for life-saving stem cell match for 15-month-old Evie with rare disease

Evie Sanassy

Evie Sanassy, who was born in Beckton - Credit: Rouku Sanassy

A toddler from Newham who has an extremely rare disease has had to have six gruelling rounds of chemotherapy at just 15 months old and now needs a life-saving stem cell match.

Evie Sanassy, who was born in Beckton but recently moved to Rochester, has a life-threatening immune condition called macrophage activation syndrome and Still’s disease.

The little one has had the chemotherapy, but doctors now need a stem cell transplant.

However, it is more difficult to find a match because Evie is of Mauritian heritage. 

Evie's dad, Daven Sanassy, said: "We’re not sure that even if someone does come forward in a month’s time and gets checked that it will be soon enough for Evie.

"But we’re hoping that it will be.

"They’re trying to buy us as much time as possible at the hospital, but either way we still think it’s really valuable.”

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According to charity Anthony Nolan, white patients have a 72 per cent chance of finding the best match from an unrelated donor compared to 37pc chance for patients from a minority ethnic background.

“We were not clued up on how people who are not white are really at a disadvantage just because there aren’t enough people of the same ethnicity on the registers," software engineer Daven said.

"Whatever we can do to get people of all ethnicities – especially any ethnicity that is underrepresented on the register - to come forward now.

“Children like Evie need young people to have been on the register a year ago, so that they can go straight to it and have the perfect match straight away so they can do the transplant.”

Alongside Evie's mum Rouku, they noted how easy it is to get on the regsiter.

“You get swabbed, a cheek swab, and send it off and they add you to a register. If you’re a match, you do some further testing to make sure you’re healthy.

“It’s completely harmless and doesn’t cost any money, and you could save a life.”

Henny Braund, chief executive of Anthony Nolan, said: "After being told that your child needs a lifesaving transplant it can be devastating to be told that not only are you not a match but that the chances of finding a perfect match are significantly lower because of their heritage."

He called on young people aged 16-30 from South Asian backgrounds to sign up. 

Join the register at www.anthonynolan.org/match4evie