After months of relentless medical appointments and overwhelming financial strain, a Somerset Park family has finally received life-changing news.
Parents Trysten and Jade Aldworth, whose one-year-old daughter Allysa Cas Aldworth was diagnosed with a rare and severe genetic condition, have announced a major breakthrough: their United Kingdom visa has been approved, allowing Allysa to travel for critical treatment.
Allysa was diagnosed with Mucopolysaccharidosis Type I (MPS I), a rare genetic disorder caused by the absence of the IDUA gene. This gene is responsible for producing an enzyme that breaks down complex sugars in the body. Without it, these sugars accumulate, causing progressive and life-threatening damage to organs and tissues.
Since last year, Allysa has received monthly Enzyme Replacement Therapy (ERT) while awaiting travel approval. The treatment costs approximately R92,000 per month, placing immense financial pressure on the household. Despite this, the therapy was essential to stabilise her condition pending a more permanent solution.
With the UK visa now approved, Allysa can undergo a Haematopoietic Stem Cell Transplant (HSCT)—a procedure that offers hope for long-term improvement.
Her father, Trysten Aldworth, said the transplant represents a critical turning point. He said: “A successful transplant for Ally would mean life could continue past the age of 10. The purpose of the transplant is to enable Ally’s body to produce the enzyme she currently doesn’t have. This would allow us to live a somewhat normal life, without the exorbitant financial strain, without weekly ERT treatments, and with the freedom to truly enjoy life with our daughter without her diagnosis constantly hanging over us.”
Trysten added that reaching this milestone has felt like a lifetime. “From a progress point of view, everything finally picked up speed, but it took months of uncertainty to get here.”
Adding to the challenges, Allysa’s mother, Jade, stopped working to focus entirely on her daughter’s care. “This means our little family is surviving on a single income,” Trysten said. “I can honestly say it’s been beyond stressful.”
The family faced a difficult decision when they could no longer afford both the ERT and save for the UK journey. They ultimately took a loan to continue Allysa’s treatment.
Despite the strain, the Aldworths have been buoyed by an outpouring of support. “Thanks to the generosity of friends, family, and even complete strangers, we’ve received donations that have helped us cover some of the enormous costs,” Trysten shared.
As they prepare for their journey, the family continues to seek financial support to ensure the treatment’s success. Their BackaBuddy fundraising campaign remains open for donations.
Donations can be made at: https://www.backabuddy.co.za/campaign/our-only-hope-lies-across-the-ocean.
