It seemed an insurmountable task when parents Zeliha and Tuncay Fidan launched a campaign last autumn to raise nearly £2 million for pioneering treatment to save their baby son Metehan, who has severe spinal muscular atrophy (SMA).
Yet last week, the couple announced they had reached the required total of $2.4 million (£1.9 million) to cover the cost of Zolgensma – a lifechanging American drug for children with Type 1 SMA.
Born on 12 November 2019, Metehan was diagnosed with Type 1 SMA when he was just a few months old. He is one of an estimated 10,000 babies worldwide who are born with SMA.
What is Type 1 SMA (spinal muscular atrophy)?
Type 1 SMA wastes away skeletal muscles, leaving the body severely weakened. Babies with the condition not only have very weak and floppy arms and legs, but they also have problems moving, eating, breathing, and swallowing.
One of the primary causes of the disease is a defective gene, which fails to produce the survival motor neuron (SMN) protein. Motor neurons are part of the central nervous system, helping to control muscles. If the SMN protein is lacking, motor neurons cannot perform their normal, vital functions.
The life expectancy for children with this rare neuromuscular disease is very low – the vast majority fail to make it beyond two years of age.
The Fidans live in Leicester and once doctors at their local hospital the Leicester Royal Infirmary told them about Metehan’s condition, getting him the right treatment became essential.
Metehan was prescribed Spinraza, which is the main NHS-approved drug to treat Type 1 SMA. It is an invasive spinal infusion treatment that Metehan would need to take for the rest of his life.
The family also heard about Zolgensma, an important new alternative medicine that only needs to be administered once, meaning far less pain and risks for patients. It is being used in the USA with great results, but has yet to be approved for the UK.
“life expectancy for children with this rare neuromuscular disease is very low – the vast majority fail to make it beyond two years of age”
Yet time was of the essence to save Metehan – not only because of the life-threatening nature of his disease, but also because the makers of Zolgensma have strict criteria. For the drug to work the child must be under the age of two and weigh less than 13 kilos.
Metehan’s family decided to try and raise enough money to cover the cost of the American drug, and with the support of friends and family they launched a fundraising campaign last September – when Metehan was aged 10 months.
The fundraising team set up a dedicated website and a GoFundMe donation page. They also created ‘Metehan’s SMA Journey’ profiles on multiple social media platforms, including Instagram, Facebook, and TikTok, to reach as many people as possible.
Famous British Turks with large followings were approached to help promote the campaign, from TV presenter Kem Cetinay, to actor Tamer Hassan and food broadcaster Leyla Kazim.
The Fidans’ local newspaper Leicester Mercury led the publicity charge, with UK Turkish media like T‑VINE adding to the coverage to help raise awareness. The donations quickly started to come in.
Trying to run a large fundraising campaign is, however, challenging enough at the best of times, but doing it during a lockdown is much, much harder.
Covid restrictions prevent physical interaction, the financial situation of many people has been adversely affected, and there is donation fatigue with the never-ending requests of people in dire need of financial assistance during the pandemic.
The team were not deterred. From regular live updates on how Metehan was doing, to auctioning items donated by supporters and celebrities such as Everton and Turkish international player Cenk Tosun and Arsenal’s Mesut Özil all helped increase the fundraising total.
In an interview with Leicester Mercury last week, Mr Fidan explained how they got going:
“It started off with donations from family and friends and then we got the support of the Turkish community in Leicester as well as in Luton. The word spread, and we were getting support from all communities from all over.
“One 13-year-old raised a few thousand by doing a sports challenge from his home. Everyone got involved, so Metehan could get this miracle medicine,” said Mr Fidan.
He said he was ‘blown away’ by the support and acts of kindness from total strangers, and called them “Metehan’s heroes or his ‘angels.”
Atilla Uston, a family friend and chairman of the Luton Turkish Community Association who co-ordinated the fundraising efforts, said, “We had run many campaigns and initiatives before, but nothing on this scale.
“We had fundraisers from as far as Aberdeen. People started making and selling things to raise the funds and we even had live Instagram auctions to help raise the money” Mr Uston said.
“I had a message from someone I didn’t even know who said they had donated £100, but they wanted to do more and asked how they could help. They told 10 more people to donate, who told even more people and it just went from there, ” added Mr Uston.
On 14 January, the family confirmed they had reached their target of £1.9 million. Parents Tuncay and Zeliha posted this message on their GoFundMe page:
“Our campaign to raise the required £1.9 million for our baby boy Metehan’s Zolgensma treatment has officially come to an end after 138 days. Words cannot describe what we are feeling right now as a family.
“During these 4 months there were times where we lost our hope, didn’t believe we’ll finish the campaign. Yet, here we are.
“I don’t think we can ever thank you enough for all your support. All donators [sic] held our hands and walked us through the most difficult time of our lives.
“This doesn’t mean that our journey has come to an end. We are now in the process of finalizing offers made from hospitals that offer the Zolgensma treatment. There are many tests and medical requirements that need to be fulfilled before we can actually receive the treatment. We’ve started these processes and will keep you informed at all times.
“On our second phase of the journey, we’d like you to continue your support. While we have completed the financial side of things, a new journey awaits us after the Zolgensma treatment. We will watch Metehan’s journey together.
“Thank you all once again for your support. There are no words to describe how we appreciate everything that has been done for us. Zeliha and Tuncay Fidan”.
While he can’t be cured of SMA, once Metehan receives Zolgensma he will have the chance to lead a fairly normal life.
The family are now waiting to see whether the drug company will allow Metehan to have the drug administered in Britain or whether the family must travel to a children’s hospital in the USA for the treatment.