AFTER months filled with anxiety, many hospital visits and emotional ups and downs, there is finally renewed hope for baby Alyssa “Ally” Aldworth. This brave girl will soon travel to the UK for a bone marrow transplant that could change her life, as she battles MPS 1 (Hurler Syndrome).

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

Alyssa’s diagnosis

The rare and potentially life-threatening genetic disorder affects one in 100 000 children and 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.

Jade Aldworth, Ally’s mother, said that the last few days have been a whirlwind of emotions after what seemed like forever to wait.

“Since May 2024, we have been waiting, and suddenly everything is happening so fast. Our UK visa has been approved, and while we are so thankful and excited, we are equally nervous. This next part gives us hope, but there’s much we don’t know,” said Jade.

For the last seven months, Ally and her family have gone to the hospital each week for enzyme replacement therapy (ERT), which has helped to manage her condition for now. The hospital has become like a second home during this time. “The doctors, nurses and staff cared for Ally, and me, with so much care. Saying goodbye is hard,” she said.

Moving to the UK is a big moment for Ally as she will receive care from a doctor who specialises in MPS transplants. The family has also connected with other MPS families overseas. “Knowing there’s a team that really understands this illness makes us feel better. We have become friends with other MPS families and can’t wait to meet them in person,” she said.

The upcoming treatment

While the bone marrow transplant is not a cure, it could slow down the MPS 1 and really improve Ally’s life. This involves strong chemotherapy, drugs to weaken the immune system and months of treatment, recovery and staying away from others.

“The aim is to replace Ally’s cells with cells that can make the enzyme she needs. If it works, she will not need weekly ERT anymore, and that would be amazing,” said Jade.

Ally still does not have a perfect donor match, but doctors are okay with using a potential 9/10 matched donor and a 7/8 cord blood match.

This journey has been hard on them emotionally and financially. They’ve been struggling to pay for the R92 000 monthly cost of ERT, while saving to get Ally to the UK. “It got too hard. We had to take out a loan to make this trip happen,” said Jade.

Supporting baby Alyssa’s journey

Their BackaBuddy fundraising campaign has not reached its goal yet, but the community is giving them great support.

“To everyone who has donated, shared, prayed or helped us, thank you. Your kindness has helped us more than you know,” she said.

There is no set date for the transplant yet, but now that the visa is approved, the UK hospital will start making final plans.

If you are interested in helping the family and helping baby Ally get the care she needs you can donate through Ally’s BackaBuddy at https://www.backabuddy.co.za/campaign/help-baby-alyssa-thrive-urgent-mps1-treatment or make a direct donation to their FNB account, account number: 63172498909.

As the Aldworth family gets ready to leave South Africa, they’re sharing a message of courage, thanks and hope for Ally and the future they’re trying to create for her.

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