Family of Luton boy, 5, with deadly disorder on mission to raise £65k for life-saving treatment

The family of a little boy from Luton struck down by a rare genetic condition are on a mission to raise £65,000 for life-saving treatment.

Wednesday, 11th September 2019, 5:56 pm

Huzaifah Zia is a "bubbly boy with a great sense of humour" and tis he apple of mum Sehrish and dad Shohaib's eyes.

But at the age of just seven months, little Huzaifah was diagnosed with a rare condition called AADC (Aromatic Amino Acid Decarboxylase Deficiency).

The condition - which affects all aspects of Huzaifah's movement and development - is a form of Parkinson's Disease and affects the brain’s ability to produce dopamine and serotonin that carry signals between nerve cells and the brain.


After being denied treatment on the NHS, family are now fundraising for pioneering gene therapy treatment at the Brodno Hospital at Warsaw, Poland.

So far, they have raised nearly half of the £65,000 needed.

Dad Shohaib said: "Huzaifah was born with this condition, but was diagnosed at the age of 7 months after a lot of struggle with his GP.

"It has left him at the newborn stage of physical development. Life is a constant struggle for him as he has to have long feeds via a feeding tube, alongside physiotherapy and occupational therapy.

"He is also on 16 medications, 6 times a day."

Huzaifah has been given the opportunity to take part in gene therapy in Poland which would replace the faulty mutated gene with the healthy copy that he’s deficient in.

As the NHS have declined to fund his treatment, the director of the AADC Research Trust asked Huzaifah's parents to open a fundraising page to raise the £65,000 necessary for this life saving operation.

Dad Shohaib added: "Over the last 2 years, a few children have had gene therapy in the US and Japan and so far the results have been very promising.

"The children have made a lot of improvement, and there is evidence it improves motor and neurological function."

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