A crowdfunding campaign has been started for 10-month-old Metehan Fidan with spinal muscular atrophy (SMA) type 1. The page was set up by a family friend of Metehan’s father and mother Tuncay and Zeliha Fidan.
Organiser Dr Mesut Erzurumluoglu from the University of Cambridge, MRC Epidemiology Unit at Addenbrooke’s Hospital wrote: “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.”
The page has raised over £35,000 in just two days but with a big target, Dr Erzurumluoglu is appealing to any that can help no matter how small to donate to help little Metehan get the fighting chance to have the treatment he really needs.
To donate visit https://uk.gofundme.com/f/metehan039s-sma-type-1-treatment .
