Family Lifestyle

Baby missed out on the world’s life saving most expensive drug because he was a week too old [Video]

A couple are fundraising to pay for the 'world's most expensive drug' for their eight-month-old son after he missed out on NHS-funded treatment because he was a week 'too old'. 

Mostafa and Tara Aballai, from London, need £1.8million to pay for a one-off therapy for their son Zakariya, who has spinal muscular atrophy (SMA), a rare degenerative genetic condition causing paralysis, muscle wastage and respiratory failure. 

More than half of babies suffering from SMA do not make it past their second birthday and until two years ago there were no proven treatments.

Now the NHS is offering a pioneering gene therapy known as Zolgensma, which has been shown to prevent paralysis. The US-made drug is thought to be the most expensive medicine in the world, at a whopping £1.79million per dose.

Just weeks ago five-month-old Arthur Morgan became the first child to receive the drug on the NHS. 

It is administered via an IV drip and instructs …

Watch/Read More