Gracelyn “Gracey” Green may only have a few months to find a stem cell donor, as she fights a rare form of blood cancer.
The 14-month-old from Atlantis in Cape Town has become the face of a desperate drive to sign up more people of colour to the SA Bone Marrow Registry (SABMR).
Gracey was diagnosed with juvenile myelomonocytic leukaemia (JMML) in August last year, after her caregiver and great-aunt, Lizel Solomons, noticed her swollen stomach.
“The wind was taken out of my sails. I couldn’t talk, I couldn’t move. The tears just rolled down my face,” she recalled.
The diagnosis was just the first shock for Solomons – after it was determined Gracey needs a stem cell transplant to treat the disease, the family found there is not a single donor match in South Africa.
The double blow came only two months after tragedy struck the family.
Gracey’s mother, Shanique Green, died last June when a fire broke out in their Atlantis home.
As the flames crept higher, Shanique handed Gracey to her uncle and attempted to rescue her grandmother from the blaze. Both died that night, along with her grandfather and uncle.
Solomons said: “I lost both my parents at once, along with my brother. It’s hard to accept that Gracey’s mommy is not here to see her take her first steps.”
Despite her illness, Gracey remained a cheerful toddler who loved to dance, she added.
“She is a joy to have around. She loves dancing and will even dance when there’s no music. She learns very quickly and she’s always happy – she loves blowing kisses. She doesn’t show her pain, but I can see it’s there.”
Gracey’s symptoms first appeared last July when she developed an unusually swollen tummy.
Solomons took her to a doctor, and she was transferred to the Red Cross War Memorial Children’s Hospital for urgent treatment. Gracey’s tests showed she had an enlarged spleen, liver and lymph nodes, and she was eventually diagnosed with JMML.
“It happens when certain white blood cells, called monocytes and myelocytes, don’t mature as they should. This can either happen suddenly or can be associated with other genetic disorders in some children. In Gracey’s case, it’s linked to the former,” said Solomon.
“Since the diagnosis, she’s been on several chemotherapy drugs to slow the spread of cancer cells and has undergone chemo without any improvement.”
Gracey’s only chance of survival lies in a stem cell transplant, but there is no donor that matches her on the South African registry. This has seen the family embark on a large-scale drive to sign up as many donors as possible.
Her father, Lorenzo Erasmus, said: “Doctors aren’t certain how long she will live without a transplant, but our focus right now is to find the best match. The better the match, the better her survival rate after the procedure.”
The SABMR is facilitating a donor match for Gracey and is imploring people of colour to get tested to see if they could be a possible stem cell match.
The acting head of patient services for the SABMR, Zaahier Isaacs, said Gracey was classified as an emergency transplant case and there was no time to waste.
“In most cases, family members, especially siblings are generally most suitable, but even then, only 30% of patients are lucky enough to find a suitable match among their relatives. That’s why we must cast the net wider to the public to find the best possible match,” he added.
People of colour were heavily underrepresented on the registry, said Isaacs.
This means it is much more difficult for patients of colour to find a matching donor – Gracey currently has a one in 100 000 chance of finding a match.
There are currently only around 74 000 donors on the registry.
“The likelihood of people from mixed ethnic backgrounds finding a successful match is a mere 37% compared to patients from European descent whose chances are 72%.
“The procedure to donate stem cells is non-invasive and takes less than a few minutes to sign up on our website. Anyone in good health, between the ages of 16 and 45, can register,” said Isaacs.
Alongside the donor drive, the SABMR has launched a crowdfunding campaign to raise R500 000 towards procuring additional buccal swab testing kits and cover the costs of donors’ medical tests in a hope to save Gracey’s life.