⁠Help Five-Year-Old Matty Bravely Facing One of World’s Rarest Genetic Disorders

Photo Credit: Bridget Bailey

Matty is only five. He lives with one of the rarest genetic disorders. At the time of his diagnosis, only 400 cases had been documented worldwide. His loving parents are seeking support to help give him the comfort and mobility he deserves.

George, South Africa (28 July 2026) – Right now, a brave five-year-old is facing life with Allan Herndon Dudley Syndrome (AHDS/MCT8), one of the world’s rarest genetic disorders. His parents are doing everything in their power to rally the urgent support he needs.

Matty was born premature at 35 weeks during the height of the COVID-19 pandemic. He spent his first week in the NICU before finally going home with his mom and dad, the Baileys.

As he grew, his parents noticed that he wasn’t reaching the usual milestones expected for his age and development. Then came a flurry of appointments with specialists, an MRI scan and genetic testing, and Matty’s blood samples were sent off to the United States.

Months later, the family received the devastating diagnosis of Allan Herndon Dudley Syndrome, a condition so rare that fewer than 400 cases had been documented worldwide at the time.

The disorder has a severe impact on brain development, movement and muscle control. Matty unfortunately cannot walk, sit unsupported or control his movements, and he is non-verbal. He relies on his parents and carers for assistance with every aspect of his day-to-day life.

Despite the unimaginable challenges he faces, his parents describe him as a happy little boy. He loves listening to music, spending time outdoors, going for walks and splashing in the bath. Those simple moments bring him so much joy, which is why having the right equipment to support him has become increasingly important.

As Matty has grown, he has outgrown his stroller and is becoming too heavy to carry safely. The Baileys are holding onto the hope that they can get him a specialised wheelchair that will give him greater comfort, support and the chance to experience more of the world around him.

Progress has been made, and a custom-built wheelchair has been designed specifically for his needs, which would allow him to continue enjoying family outings, attend therapy more comfortably and give him the support his growing body requires.

The next hurdle for the Baileys, as with many families caring for a child with complex medical needs, is financial.

While medical aid will cover part of the cost for the new wheelchair, Matty’s parents are left with a substantial amount to pay themselves. They already face the ongoing costs of full-time care, specialist appointments, therapy and specialised equipment. The remaining cost of the wheelchair is simply beyond what they can afford alone.

“We are therefore asking for your help. Initially our goal is to raise R120 000 for the custom-built wheelchair. Any donations above that will go towards surgeries, a vehicle adapted for his wheelchair, specialised mobility and therapeutic equipment, as well as ongoing therapy.”

The family has launched an online crowdfund with an initial goal of raising R120,000 to fund the wheelchair. The online crowdfund started 25 days ago and has already raised over R54,000! Forty-eight incredible individuals have chipped in to help the family get to the finish line.

With just over halfway to go before they can afford Matty’s wheelchair, the Baileys hope their appeal will reach more kind souls who are willing and able to help.

“Every donation, no matter how small, will help give Matty greater comfort, dignity and the freedom to experience more of the world around him. If you are unable to donate, simply sharing his story may help us reach someone who can.” writes Bridget, Matty’s mom.

The family desperately wants to give their little boy the freedom to continue enjoying the things he loves and making it easier for him to experience the world around him. Anyone who is able to donate, or simply share Matty’s story, can help make that possible.

If you’d like to show your support, follow this link.