The parents of seven-month-old Alyssa Cas Aldworth are appealing for financial assistance after their first child was diagnosed with a rare and severe genetic condition.
Jade Trysten, 29, and Trysten Aldworth, 30, who have been together since 2013 and married for five years, received the joyous news of Jade’s pregnancy with baby Alyssa in 2024. They honoured Jade’s late father, Craig Andrew Suttie, who passed away from cerebral malaria in July 2023 at the age of 47, by giving Alyssa the middle name ‘Cas’.
Following a successful pregnancy and birth, Alyssa faced an early challenge when she developed heart and lung issues. “Fortunately, she was able to fight through it and 10 days later she was allowed to leave the NICU,” said her father, Trysten Aldworth.
Despite this initial victory, Alyssa and her parents embarked on a journey of frequent doctor and hospital visits for close monitoring and specialist consultations, seeking to identify the underlying cause of her health struggles. “After countless Doctor’s visits, we were advised to see a geneticist to get to the bottom of it which is when we found out she has a rare and severe genetic disease/disorder called MPS1,” Aldworth revealed.
Mucopolysaccharidosis Type 1 (MPS1) is a rare inherited condition caused by the absence of the IDUA gene, which is essential for producing an enzyme that breaks down complex sugars in the body.
Trysten described the devastating impact of the diagnosis: “There’s nothing we can actually say to describe the feeling of being told that your only child has an extremely slim chance of living a long life. Most children not making it past their 10th birthday due to its high mortality rate. As parents, our jobs are to protect and nurture, and with severe MPS1, the feeling of failure in doing the above is beyond an understatement.”
A glimmer of hope emerged with the recommendation of Enzyme Replacement Therapy (ERT), using a drug called laronidase (Aldurazyme). However, the staggering cost of this lifelong treatment, estimated at R19,516.16 per week or R78,064.64 per month (excluding VAT), left the family stunned.
Further heartbreaking news followed: ERT cannot cross the blood-brain barrier, limiting its effectiveness in clearing neurological damage caused by MPS1. Doctors are now considering a Hematopoietic Stem Cell Transplant (HSCT), which offers greater effectiveness if performed within the first two years of life. While HSCT abroad is estimated to cost up to R4.9 million, the parents are now exploring more affordable options within South Africa.
In a heartwarming display of community support, a BackaBuddy campaign has been launched to raise funds for Alyssa’s treatment. “It’s truly heartwarming to know there are platforms out there like Back a Buddy to help people like us get the help they need,” Trysten expressed, thanking those who have contributed.
The campaign has, so far, reached over R200,000 towards its R468,000 goal, demonstrating a significant outpouring of generosity for baby Alyssa. Visit https://www.backabuddy.co.za/campaign/help-baby-alyssa-thrive-urgent-mps1-treatment? to help.
