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Kent: Toddler needs stem cell donor after contracting rare disease

A British family whose toddler was flown over 2,000 miles to hospital after contracting a rare disease while on holiday is desperate for a stem cell donor to save her life.

Evie Sanassy desperately needs a stem cell donor to cure her of a rare but deadly autoimmune disease (Ferrari Press)

The family of a toddler who falls ill with a rare disease while on vacation is desperate for a stem cell donor who can save their life.

Evie Sanassy was diagnosed with the immune disorder Macrophage Activation Syndrome (MAS) after contracting a fever and rash while traveling to visit her grandparents in Mauritius in October.

She’s currently undergoing chemotherapy, but the grueling nature of the treatment and the risk that she could develop cancer means she can’t stay with it forever.

Now, with the support of the Anthony Nolan Trust, her parents are scouring the globe to find a suitable stem cell donor for Evie.

But finding the perfect match is complicated by Evie’s mixed heritage of Mauritian, Sri Lankan and South Indian roots, giving her a unique genetic makeup.

White patients have a 72% chance of finding the best match from an unrelated donor, but that number drops to just 37% for patients of ethnic background.

In a race against time to help his daughter Daven, Evie’s father is imploring as many people as possible, particularly those of South Asian background, to join the stem cell registry.

FERRARI PRESS AGENCY...A British family whose toddler was flown over 2,000 miles to hospital after contracting a rare disease while on holiday is desperate for a stem cell donor. OPS: (LR) Father Daven, mother Rouku and Evie. Credit: Daven Sanassy

Evie first fell ill while on holiday with her parents (Image: Daven Sanassy)

Daven, 40, said: “I urge everyone to consider enrolling in the stem cell registry and would like to emphasize that not only is the enrollment process easy, but I also want to make it clear that there is a greater need for people of South Asian background and other minorities than everyone else.

“Signing up is a great way to support your own community and people of similar heritage.

“Stem cell donation is usually a straightforward process, similar to donating blood, and you could save a child’s life.”

When Evie initially fell ill, doctors thought the 15-month-old had Kawasaki disease, a lymph node syndrome linked to Covid.

A difficult few weeks saw the toddler, from Rochester, Kent, who was flown from Mauritius to South Africa for treatment, before she was well enough to return home.

FERRARI PRESS AGENCY...A British family whose toddler was flown over 2,000 miles to hospital after contracting a rare disease while on holiday is desperate for a stem cell donor. OPS: 15 month old Evie Sanassy in the hospital. Credit: Daven Sanassy

Evie had a tough time in hospital, which included “close cases”, her father said (Image: Daven Sanassy)

Back in the UK she seemed better, but two months later the rash returned.

Daven and his wife Rouku, 35, took her to Evelina Children’s Hospital in London, where doctors diagnosed her with systemic juvenile idiopathic arthritis (SJIA).

Also known as Still’s disease, it is a rare form of arthritis that causes fever, rash, swelling and pain in the joints in children.

The couple obtained a private second opinion from Great Ormond Street Hospital (GOSH), who confirmed the diagnosis and told them that while Still’s is not curable, Evie would likely go into remission as she got older.

But in early March 2022, Evie fell ill again and was admitted to GOSH, where the family received the devastating news that she had developed MAS.

FERRARI PRESS AGENCY...A British family whose toddler was flown over 2,000 miles to hospital after contracting a rare disease while on holiday is desperate for a stem cell donor. OPS: 15 month old Evie Sanassy in the hospital. Credit: Daven Sanassy

Evie is currently on chemotherapy but it’s not a long-term solution (Image: Daven Sanassy)

Autoimmune disease is a deadly complication of Still, in which the immune system cannot eliminate infectious cells and therefore produces more macrophages, cells that destroy viruses and bacteria, and T-lymphocytes that control macrophages.

The cells flood the body with inflammatory proteins that can damage organs like the heart, liver, spleen, and kidneys.

Daven said: “Only a minority of patients suffer from MAS, but it is fatal.

“It’s essentially when the immune system is going into overdrive and it has the ability to kill you pretty quickly.

“We’re lucky we caught it in time – at the moment it’s mainly attacking Evie’s liver.”

Doctors prescribed Evie a high dose of steroids, which seemed to be working, but the day she was due to be discharged from the hospital, her condition worsened again.

The toddler then developed sepsis and went into septic shock, which nearly killed her.

Daven said the situation had gotten “very tight” but commended the doctors and consultant nurses “who saved the day [Evie’s] Life’.

The GOSH team have managed to stabilize Evie with chemotherapy, but the treatment is not a long-term solution.

Anyone between the ages of 16 and 30 can join the Anthony Nolan Register online, but the charity is particularly encouraging young people of South Asian heritage to sign up.

More information on joining the registry can be found here.

Get in touch with our news team by emailing us at webnews@metro.co.uk.

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https://metro.co.uk/2022/06/10/kent-toddler-needs-stem-cell-donor-after-falling-ill-with-rare-disease-16804878/ Kent: Toddler needs stem cell donor after contracting rare disease

Justin Scacco

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