Leicestershire parents raise just under £2 million for their baby to have rare genetic treatment

• Report by Phil Brewster

A Leicestershire couple who faced losing their baby boy to a rare genetic condition, have raised an incredible £1.9 million to pay for specialist treatment.

14 month old Metehan Fidan has Spinal Muscular Distrophy, a life-limiting disease that causes muscles to waste away. His parents from Glenfield in Leicestershire say they've been blown away by the kindness of strangers.

When Metehan was born, his parents Tuncay and Zeliha say he seemed a normal happy, healthy boy. But after a few weeks, they noticed his movement slowed down.

Doctors later diagnosed Metehan with Spinal Muscular Atrophy SMA Type 1 - a rare, genetic condition which limits a person's ability to walk, eat and breathe. He uses a breathing support to keep his lungs active, and even uses a suction machine to clean his mouth.

Tuncay and Zeliha set about researching the illness and came across Zolgensma - a drug only available in America & Europe. It works by replacing the lost genes caused by SMA and prevents further muscle wastage. 

However, a single dose would cost £1.9 million pounds. The couple turned to the Turkish community for help in raising funds. Using social media, thousands of people around the world began a huge fund-raising campaign.

And in just four months, they have reached their target of £1.9 million. His parents say they're beyond grateful for the generosity shown by strangers.

Metehan's parents are currently waiting to hear if the drug can be brought to the UK. Otherwise the family will have to travel to Boston in America when covid restrictions allow. While there is no cure for SMA, his parents say the drug will at least give their little boy a shot at something like a normal life.