Seven-month-old Alyssa Cass Aldworth is battling a rare and severe genetic condition and is in need of a bone marrow transplant. After her parents, Jade Trysten, 29, and Trysten Aldworth, 30, found out that their baby was diagnosed with Mucopolysaccharidosis Type 1 (MPS1), they quickly sought to find a cure for their little baby.
Upon searching for treatment options, the parents discovered two possibilities: Enzyme Replacement Therapy (ERT) and a bone marrow transplant (also known as a stem cell transplant). “While ERT is important as it helps slow some of the disease’s progression by supplying the body with the missing enzyme, it does not reach the brain and therefore cannot stop the neurological decline caused by MPS1,” explained Aldworth.
According to him, this is where the bone marrow transplant becomes vital, as it can cross the blood-brain barrier. “This means they can deliver the missing enzyme directly to the brain, offering the only chance to preserve Alyssa’s cognitive development and give her a better quality of life long-term,” he added.
So far, the parents have received a donor who is a 9/10 match. However, the donor is from overseas, which poses significant financial and post-transplant issues due to infections and the bone marrow graft not holding. Despite Alyssa’s urgent condition, the father says that their medical aid has not yet approved funding for treatment, stating that the parents are not on the medical aid’s highest plan.
“Upgrades only open at the beginning of each year. We are now facing an uphill battle not only to find a donor but also to raise the significant funds needed for the urgent ERT treatment at R89,774.30 a month,” continued the father.
The process to become a registered donor is simple and non-invasive. Through DKMS, one of the leading donor registries, anyone between the ages of 18 and 55 in good health can register online and receive a free cheek swab kit by mail. Once the potential donor returns the swab, their tissue type is analysed and added to the international registry.
If they are a match for Alyssa – or for someone else in need – DKMS will contact them to begin the next steps in donation. For many donors, the process is similar to donating blood and does not require surgery. “Ally is happy, but the sad reality is that MPS1 is destroying her body from the inside out, and the longer we can’t get her the treatment, the worse things are going to get,” he stated.
Visit https://www.dkms-africa.org/register-now to learn more.
