Family hope to fund life-saving treatment for son

The family of a toddler with a rare incurable brain disease are hoping to raise £200,000 to fund potentially life-saving treatment.

Eliyas Bashir, who is 17 months old, is living with a condition called TUBB4A-related leukodystrophy, which affects his ability to walk, speak or hold himself upright.

His mother, Jasmin Matharu, said the "extremely rare" illness was "life-threatening" and would see her son's health begin to decline when he turns three.

She said a trial treatment for Eliyas in the US was the Wakefield family's "only hope", adding: "It's really hard to wrap your head around. Every day is a different level of grief."

The youngster's rare condition affects the parts of the brain which control movement and communication.

"Some days are really great because we see him hit another new milestone and other days it's just, 'how do we do this?'," said Jasmin, who ran the Leeds 10K last month to raise funds for her son's treatment.

Eliyas's dad Hasnain said the family's situation was "devastating".

"When we found out that Jasmin was pregnant, in my mind I was like, 'my child will stand on my shoulders and take on the world'.

"Destiny had something else written for us, so we are just going to do what we can to give him the best quality of life."

Jasmin and Hasnain hope to raise enough money to fund a gene therapy programme to slow or alter the development of their son's condition.

"It would be life-changing for Eliyas and for us as a family," said Hasnain.

Dr Elizabeth Berry Kravis, of Rush University Medical Centre, who is involved in the programme, said: "Right now, Eliyas is living with a condition for which there is no cure and ultimately he won't have a normal lifespan.

"This treatment is reversing the mechanism of his disease and what we hope is that can normalise the brain and we can see a better outcome for him where he can have a more normal life."

The family have so far raised almost £40,000 towards their target.

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