A toddler’s family is desperately looking for a stem cell donor to save her life after she became ill with a rare disease while on vacation.
After developing a fever and rash while visiting her grandparents in Mauritius in October, Evie Sanassy was diagnosed with the immune disorder Macrophage Activation Syndrome (MAS).
She is currently undergoing chemotherapy, but due to the arduous nature of the treatment and the possibility of developing cancer as a result, she will not be able to continue with it forever.
Her parents are now searching the world for a stem cell donor match for Evie, with the help of the Anthony Nolan Trust.
Evie’s mixed history of Mauritian, Sri Lankan, and South Indian ancestors, which gives her a unique genetic makeup, maes her hunt for the perfect match dffcult.
Patients from white ethnic backgrounds have a 72 percent chance of getting the best match from an unrelated donor, but patients from minority ethnic backgrounds have only a 37 percent chance.
In a race against time to save his daughter, Daven, Evie’s father is pleading with as many individuals as possible to join the stem cell registry, particularly those from South Asian backgrounds.
Daven, 40, said: ‘I urge everyone to consider signing up to the stem cell register and want to stress that not only is the sign-up process simple, but I also want to make clear that those from South Asian backgrounds and other minorities are more needed than any other.
‘Signing up is an amazing way to support your own community and people of similar heritage.
‘Donating stem cells is usually a straightforward process similar to donating blood and you could save a child’s life.’
When Evie was first diagnosed, doctors assumed she had Kawasaki disease, a lymph node ailment associated to Covid.
The toddler, from Rochester in Kent, was transported to South Africa from Mauritius for treatment before she was healthy enough to return home after a difficult few weeks.
She appeared to be getting better once she returned to the UK, but the rash reappeared two months later.
Daven and his 35-year-old wife Rouku took her to London’s Evelina Children’s Hospital, where she was diagnosed with Systemic Juvenile Idiopathic Arthritis (SJIA).
The disorder, also referred to as Still’s disease, is a rare form of arthritis that produces fever, rash, swelling, and discomfort in children’s joints.
While Still’s disease is incurable, the couple sought a second opinion from Great Ormond Street Hospital (GOSH), which verified the diagnosis and assured them that while the disease is incurable, Evie would most likely go into remission as she grew older.
However, Evie became ill again at the beginning of March 2022, and she was sent to GOSH, where her family received the tragic news that she had had MAS.
The autoimmune disorder is a fatal complication of Still’s disease in which the immune system is unable to eradicate infectious cells, causing the immune system to manufacture more macrophages (cells that destroy viruses and bacteria) and T-lymphocytes (cells that govern macrophages).
A lot of Inflammatory proteins are released by the cells into the body, which can harm organs such as the heart, liver, spleen, and kidneys.
Daven said that ‘Only a minority of patients suffer with MAS but it’s deadly. It’s essentially when the immune system is pushed into overdrive and it has the ability to kill you pretty quickly.
‘We’re lucky we caught it in time – it’s mainly attacking Evie’s liver at the moment.’
Doctors put Evie on a high dose of steroids, which seemed to help, but she worsened again on the day she was supposed to be discharged from the hospital.
After that, the toddler developed sepsis and went into septic shock, which almost ended her life.
Daven described the scenario as “very close,” but commended the doctors and consultant nurses “who saved [Evie’s] life.”
Chemotherapy has stabilized Evie, but it is not a long-term solution, according to the GOSH team.
Anyone between the ages of 16 and 30 can sign up for the Anthony Nolan register online, but the organization is especially encouraging young people of South Asian descent to do so.