THE Bluff is rallying behind baby Alyssa “Ally” Aldworth, a one-year-old who has been diagnosed with Hurler Syndrome (MPS 1), a rare and potentially life-threatening genetic disorder that affects just one in 100 000 children.

Also read: Community unite to find baby Alyssa a bone marrow match

The start of the journey:

Prematurely born a month earlier on September 24, 2024, Ally was in the neonatal intensive care unit for her first 10 days, and her physicians believed her underdeveloped lungs and small heart condition, Patent Foramen Ovale (small hole in the heart), would sort itself out over time.

Jade Aldworth, Alyssa’s mother, said they were told not to worry. “She failed her newborn hearing test and had a few follow-ups, but each specialist was happy with her progress regardless. We thought the worst was behind us,” said Jade.

But when Ally was six months old, Jade noticed that Ally sat more in the shape of a “W” which she believed was a sign of weakness or spinal issues. Jade said she took Ally to a physiotherapist, who discovered her spine was curved.

“The geneticist discovered Ally’s liver was enlarged, and she sent us for blood and urine tests. The results took six to eight weeks, and that wait was agonising. In my anxiety, I did what every parent is warned not to do, my best friend, I googled. Every symptom I read for Hurler Syndrome matched Ally’s story, and when I saw videos of other parents sharing their journeys, I just knew deep down this was it,” said Jade.

On May 23, when Ally was seven months old, Jade said their worst fears became real. She was diagnosed with MPS 1 – Hurler Syndrome. The genetic disorder occurs when the body lacks a crucial enzyme to digest complex sugars. Without it, these sugars build up in the body and cause damage to cells, bones and organs including the brain. While there is no cure there are treatments that can help slow the disease.

Treatment:

“The first is Enzyme Replacement Therapy (ERT), which replaces the missing enzyme and helps the body clear out those harmful sugars. But ERT doesn’t cross the blood-brain barrier, which means it can’t protect the brain. That’s why a bone marrow (stem cell) transplant is also recommended as soon as possible as it can help preserve brain function and give children like Ally a better quality of life,” said Jade.

Treatment costs a staggering R92 000 per month, and while the family’s medical aid considers their application, they have turned to the community for support. “My heart broke all over again. How could any young family afford that? We hoped our medical aid would help, but were warned it could take up to three months to approve treatment. It’s now been five months, and we’re still fighting,” she said.

Community support:

The family is now desperately seeking a bone marrow donor match. A donor drive and fundraiser will be held at Rush Hair and Beauty Studio, 29 Beacon Road, The Bluff, on October 25, in a bid to achieve a lifesaving match for baby Ally.

“Our community has been incredible. From the moment Ally was diagnosed, people have surrounded us with love – sending care packages, meals, donations, and endless support. Because of their kindness, Ally has now reached week 15 of ERT, and every week is another victory made possible by them,” said Jade.

Despite the immense challenges ahead, the Aldworth family remains hopeful. Jade said this journey has shown them what true strength looks like. “Through all the fear and heartbreak, there’s still joy, laughter and our perfect baby girl is still ours, still loved and still fighting,” she said.

Supporting baby Ally’s journey:

To support baby Ally’s journey, donations can be made to:

• Bank: FNB Cheque
• Account number: 63172498909
• Branch: 229826
• Swift Code: FIRNZAJJ

Alternatively, you can support their BackaBuddy by clicking here.

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