Dunstable business appeals for help to raise £1.9m for baby cousin with rare genetic disorder

The 10-month old was diagnosed in February
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The owners of a Turkish takeaway in Dunstable are appealing to their customers to help raise £1.9 million for life-altering treatment for their baby cousin, who was diagnosed with a a severe muscle-weakening disease

Metehan Fidan was born in November, and just two months later was diagnosed with spinal muscular atrophy (SMA) type 1, a neuromuscular disease that leads to the muscles weakening over time.

His parents, Tuncay and Zeliha Fidan, who live in Leicestershire, are hoping to raise funds towards a life-altering gene therapy called Zolgensma.

Irmak BBQ are raising money to help their baby cousinIrmak BBQ are raising money to help their baby cousin
Irmak BBQ are raising money to help their baby cousin

But at $2.1 million (£1.9m), Zolgensma is currently valued as the most expensive drug in the world, and is not yet approved in the UK.

The family have started a crowdfunding campaign to raise £1.9 million towards receiving the treatment outside of the UK.

This week, brothers Orhan and Zak Gurbuz - owners of Irmak BBQ in Dunstable - are donating three days revenue from the business to the fundraising page.

To support their baby cousin's treatment, Irmak BBQ will be forwarding all proceeds from sales from Monday, September 14, to Wednesday, September 16.

Metehan FidanMetehan Fidan
Metehan Fidan

In a post on facebook, they said: "Irmak BBQ is reaching out to our friends, family, business associates & loyal customers. Our baby cousin needs your help.

"Without everyone’s help little Metehan might not see his 2nd birthday. We have started a crowdfunding campaign for Metehan Fidan."

On the Go Fund Me page, it says: "We are starting a crowdfunding campaign for Metehan Fidan (born on 12th Nov 2019 at Leicester Royal Infirmary, Leicester, UK) who is the son of my friends Tuncay and Zeliha Fidan – both very kind and have always found ways to help their neighbours and the community they live in.

"Unfortunately, Metehan was diagnosed with spinal muscular atrophy (SMA) type 1 – a neuromuscular disease so severe that many children with SMA type 1 do not reach the age of two.

"However, there is hope: In order to have a relatively healthy future, Metehan must receive a one-time dose of a gene therapy called Zolgensma.

"As SMA is a rare disease, Novartis charges a huge fee to cover their R&D costs and make a profit: Zolgensma costs $2.1 million – with additional expenses such as travel, accommodation and consultancy fees, the total amount of reaches ~$2.45 million (currently ~£1.9m).

"For Novartis to approve Zolgensma therapy, a child must not reach 2 years or 13kg – as this negatively affects the effectiveness and the safety of the treatment. Metehan is currently 11 months old (as of September 2020), thus we have a fight against the clock.

"The family do not have the means to make up anywhere near the required amount in this time frame, thus they need our help.

"Please donate as much as you can – even if it’s a fiver – and give Metehan and his family the chance to give life a shot. Please also share with anyone you feel would be willing to help."