ALYSSA Aldworth, known to everyone as baby Ally, recently marked a significant point in her journey with MPS1 as she hit day +100 since her bone marrow transplant.

For her parents, this occasion represented more than time passing; it was a moment to acknowledge their daughter’s resilience and the hope that sustained them through intensive treatment.

Also read: Baby Alyssa jets to the UK for treatment

Baby Ally had been diagnosed with MPS1, or Hurler syndrome, a rare genetic condition that impairs the body’s ability to process certain complex sugars. This condition can lead to progressive damage in organs, bones and the brain.

While a bone marrow transplant is not considered a cure for MPS1, it can substantially slow the disease’s progression. The transplant introduces healthy cells from a donor, which can then produce an essential enzyme that Ally’s body lacks.

Her mother, Jade Aldworth, said that while the transplant marked a crucial step toward a better future for Ally, her recovery is ongoing. 

“Reaching day +100 is an incredible milestone, but Ally will continue to have regular hospital appointments, blood tests and check-ups to make sure she’s progressing well. Because MPS1 affects different parts of the body, she’ll continue to be supported by specialists as she grows. We’re hopeful for the future and excited to watch her thrive, celebrating every milestone she reaches and giving her the happiest, fullest childhood possible,” said Jade.

Ally takes a tumble

The family faced another distressing event recently when Ally sustained a serious fall, resulting in a fractured skull and bleeding in the brain.

Also read: Help baby Ally fight rare genetics disorder

“It was every parent’s worst nightmare, especially after everything she’s already been through. Thankfully, there was no active bleeding, so she didn’t need surgery. She’s been closely monitored by her medical team while her body heals naturally. It’s certainly reminded us that she’s still a toddler who wants to explore the world, even if she has been through more than most adults ever will,” she said. 

Reflecting on the journey

Reflecting on the past few months, Jade found reaching the day +100 milestone to be an emotionally significant event.

“There have been moments over the last few months where the days felt incredibly long and uncertain, so to arrive at this milestone fills us with so much gratitude, relief and hope. We know our journey isn’t over and we’ve probably got a year of isolating while her immune systems build up again but day +100 feels like a moment to stop, look back at everything Ally has overcome and celebrate just how incredibly brave she is,” said Jade. 

The Aldworth family also extended their sincere gratitude to the community for their unwavering support, encompassing fundraising initiatives, encouraging messages and prayers throughout Ally’s ordeal. 

Follow and support the journey

Jade hopes that by sharing their family’s experience, they can contribute to greater awareness of MPS1 and encourage earlier diagnoses for other children. She believes that if Ally’s story can shed light on the condition, promote earlier detection or provide solace to another family, then sharing their journey is meaningful. Updates on Ally’s progress are shared on their Facebook page where they document both the successes and challenges encountered following the transplant.

If you are interested in helping the family and helping baby Ally’s medical journey, you can make a direct donation to their FNB account, account number: 63172498909.

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