One-Year-Old Eliyas Fights Rare Condition as Mum Takes on 10K Challenge

Jasmin is taking on the Leeds 10K for a cause that means everything to her: raising funds for her one-year-old son, Eliyas, to access life-saving treatment.

Eliyas is living with an extremely rare genetic condition known as TUBB4A-related leukodystrophy. This disorder affects the development of myelin in the brain – an essential substance needed for movement, coordination, and overall neurological function.

Jasmin recalls the moment everything changed: “When Eliyas was first diagnosed, our world stopped. What we thought was a simple developmental delay turned out to be something far more serious.”

Following genetic testing, it was confirmed that Eliyas has a condition so rare that only a small number of children worldwide have been diagnosed with it. In most cases, it can limit life expectancy and lead to a gradual loss of skills over time.

Despite this, Eliyas continues to fight every day. Jasmin shares how hard he works, even to do the simplest things. He attends physiotherapy sessions with incredible determination, pushing himself just to lift his head.

“He loves giggling at silly animal noises and studying our faces with deep concentration,” Jasmin says. “He is curious, determined, and full of light.”

There is, however, hope.

A pioneering gene therapy programme in the United States could offer Eliyas more than just symptom management – it has the potential to slow, or even alter, the progression of this devastating condition. For Jasmin and her family, this treatment represents not just medical intervention, but the chance of a future together.

Time is critical. Early intervention gives Eliyas the best possible chance of benefiting from this treatment.

Unfortunately, the cost of accessing this programme is beyond what the NHS can fund. The family must raise £200,000 to cover clinical administration and hospital care at Rush University Medical Centre in Chicago, ongoing medical monitoring over the two-year programme, and essential supportive therapies to maintain Eliyas’s physical strength.

Every donation, no matter the size, brings Eliyas one step closer to the treatment that could change the course of his life.