Save Alyssa – A Baby’s Urgent Fight Against Hurler Syndrome

Help Save Alyssa in Time

Alyssa Aldworth is a joyful and curious 8-month-old baby girl living in Durban, South Africa. She is the first child of her devoted parents, Jade and Trysten, who have been married for 5 years. With her bright eyes and love of play, she lights up every room — but now faces a degenerative disease that will cut her life short.

In May 2025, she was diagnosed with MPS I - Hurler Syndrome , a rare condition caused by the absence of the IDUA gene. This gene is responsible for producing an enzyme that breaks down complex sugars in the body. These sugars accumulate causing damage to the body and brain, meaning children with Hurler Syndrome deteriorate rapidly and rarely live past the age of ten.

There is hope, but we need to act fast!

A Hematopoietic Stem Cell Transplant (HSCT) offers the best chance to stop the disease progressing because the donor cells will allow Alyssa to begin producing the enzyme for herself. But timing is everything, because the procedure at its most effective when done before a child’s first birthday.

Every month of delay increases the risk of permanent damage to Alyssa’s body and brain.

While we search for a matching donor and arrange HSCT, Alyssa must begin Enzyme Replacement Therapy (ERT) immediately to slow damage to her organs and joints. This treatment can be given in South Africa and will involve a 4-5 hour transfusion of the enzyme every single week at a cost of almost £1,000 per treatment. Sadly, this treatment cannot protect her brain, but it is essential to keep her body healthy so she is strong enough to have the HSCT and enable her to have the quality of life she deserves on the other side of all this.

This is why we need your help

As you can imagine, this comes with huge costs for travel, accommodation, not to mention the cost of the procedure itself along with pre- and post-operative care. Then there is the impact on the family’s ability to support themselves while caring for a child with complex and worsening health needs and needing to temporarily relocate.

Although Alyssa has already had some generous donations from friends and family, this is simply nowhere near enough to cover all the expenses.

Your support will help cover:

You Can Make a Difference

Every donation, no matter how small, gives Alyssa a better chance to grow up, speak, play, and live a full life. If we can achieve our target and get her treated soon, she will get the chance to experience all life has to offer, surrounded by those who love her dearly.

For South African supporters, we also have a BackABuddy campaign with all funds being combined for the same cause.

Want to Help in Another Way?

You could register as a potential stem cell donor. It’s free, quick, and involves a simple cheek swab you do at home. You are under no obligation to donate if you're a match — but every person who registers increases Alyssa’s chances of finding the donor she needs in time. Here are the links to some donor centres around the world:

South Africa: South African Bone Marrow Registry

UK: DKMS

USA: Need More Donors People

Canada: Canadian Blood Services

** Thank you for becoming part of Alyssa’s global “village” as we fight to save her in time. **

Note: My name is Jo Porter, and I am Alyssa’s great aunt, based in the UK. I have created this page on behalf of the family and any funds donated through this page will go into a dedicated bank account to be transferred to the parents or treatment facilities.