A crowd funding campaign set up for 1-year-old Metehan Fidan with spinal muscular atrophy (SMA) type 1 has raised over £645,000. The page was set up by Metehan’s father and mother Tuncay and Zeliha Fidan and a family friend Dr Mesut Erzurumluoglu.
In a post on the page, it’s explained that: “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)”
Since the page was set up the campaign has received from the Turkish speaking community in the UK and across the world with famous football Mesut Ozil calling for his followers to help. Over thousands of people have donated and raise a staging £645,000 towards the large goal of £1.9million.
Baby Metahan’s family made the following statements on social media this week: ‘We’ve raised over £645,000 and have £1.25m to go. Don’t let figures scare you. When we first started, £1.9M sounded impossible but time has shown that NOTHING is impossible when you have people support you. Every little helps, the £5, £10 that you may have to spare will contribute to our baby’s life. Please keep doing all that you can. There’s no giving up!”
To donate towards Metehan lifesaving treatment you can visit the crowd funding page https://uk.gofundme.com/f/metehan039s-sma-type-1-treatment.