Hayleigh Stals from East London celebrated two milestones this year: her ninth birthday, and her first ‘rebirthday’ – the anniversary of her successful bone marrow transplant.
Although Hayleigh was in all other ways a normal eight-year-old, large bruises kept appearing on her body. Then, after her school recommended she see an audiologist for hearing issues, she was sent to an ear, nose and throat specialist. Hayleigh was booked into hospital to have her adenoids removed, on the ENT’s recommendation, and then came a shock. She had dangerously low platelet counts – a mere 17,000 per microlitre of blood as opposed to the norm of 150,000 upwards. Hayleigh immediately had a blood transfusion and a bone marrow biopsy. The diagnosis was Fanconi anaemia, a rare inherited blood disorder that leads to bone marrow failure.
‘Our world was turned upside down,’ says her mom, Marlene. Hayleigh would need a bone marrow transplant, and although her two-year-old sister Mikaylah was identified as a possible donor, further tests showed the tissue match was not sufficient. Professor Nicolas Novitzky of UCT Private Academic Hospital, who would oversee the transplant, turned to the SABMR for help. As if by miracle, a South African woman was identified as a perfect match for Hayleigh. ‘The phone call came on a Friday afternoon. We still get emotional thinking about that day,’ says Marlene.
While dad Johan looked after Mikaylah in East London, Marlene and Hayleigh went to Cape Town, where they’d spend four months moving between the CHOC house in Plumstead, UCT Private Academic Hospital and the Red Cross War Memorial Children’s Hospital. Support flowed in from family, church friends, work colleagues, volunteer workers and fellow moms who’d been through similar experiences. ‘In Cape Town, we made lifelong friends,’ says Marlene.
The transplant went smoothly, although Hayleigh felt nauseous. ‘My mom gave me a present on the day of my transplant – a “new birthday” present!’ she says. The Frozen Lego set kept both mother and daughter happily occupied during their weeks in an isolation ward, both after the transplant, and again when Hayleigh contracted cytomegalovirus a week after being discharged from hospital.
The pair eventually returned home to East London. Despite another spell in Life Beacon Bay Hospital in East London under the guidance of Hayleigh’s paediatrician, eight months after the transplant her blood counts had finally stabilised. ‘We could now go into crowded spaces and into shops without a mask on and she was healthy enough to return to school,’ says Marlene. ‘Even now, it’s wonderful that Hayleigh can play, fall and graze her knee, and there’s no need for worry.’
Hayleigh is now a normal, energetic child enjoying life. Having missed three terms of school, she redid Grade 2 in 2018, and enjoyed her role as an island girl in the school’s Christmas concert. ‘What do I like doing most? Building Frozen Lego, riding my bike and climbing monkey bars,’ says Hayleigh. In December, the Stalses had their first post-transplant family outing: the Reach For A Dream Foundation organised a hotel getaway with ice skating and bumper car rides. ‘I fell down quite a few times,’ Hayleigh giggles. ‘And I skate faster than my mom!
Hayleigh often asks her parents about the ‘special lady’ who donated her stem cells and looks forward to meeting her one day. ‘It hits home,’ says Marlene, ‘that someone could do something like this for someone they don’t know. It’s very special.’
See the Stals family Facebook page about Hayleigh’s journey with Fanconi anaemia: https://www.facebook.com/hayleighsFAjourney
For more information on Fanconi anaemia, see www.fanconi.org.