OUR £1.9M MIRACLE
At two months, Metehan was diagnosed with a spinal condition which is set to affect him for life. But a prohibitively expensive US drug gave some hope and in just a few months strangers from across the world have raised the money...
Metehan Fidan was diagnosed with a lifelimiting condition at just two months old. With the only UK-approved treatment meaning he would be on it for the rest of his life, dad Tuncay and mum Zeliha were given hope by treatment in the US which promises to give their son a releatively normal life. The cost, at £1.9m, was prohibitive. But within months, an appeal has reached their incredible target.
AFAMILY have raised £1.9 million in the space of just a few months during lockdown for a “miracle treatment” to save their baby boy. Two months into his life, Metehan Fidan’s parents Tuncay and Zeliha, from Glenfield, realised there was something wrong with their son when his movement started to slow down.
He was then diagnosed with spinal muscular atrophy (SMA) type 1 – a severe life-limiting disease that would lead to his muscles weakening over time.
Metehan started a treatment called Spinraza, the only one currently approved in the UK to treat his condition and one that he would have to continue having for the rest of his life.
But even with the treatment, Metehan’s SMA type 1, which is the most severe of four types of the disease, meant he was incredibly vulnerable to infection and was “highly unlikely” to live beyond the age of two.
Tuncay and Zeliha wanted to give him the best chance at life they could and decided to start fund-raising for a one-time treatment called Zolgensma, specifically for those diagnosed with SMA under the age of two.
But one course of the drug, which is only available in the US and Europe, would cost the couple £1.9 million. And as Metehan was already 11 months old, his time was running out.
The global Covid-19 pandemic also meant that any fund-raising efforts would be limited, due to the need for people to maintain social distancing rules.
However, just months later, they have now reached what they thought was an impossible goal thanks to the kindness of local communities and total strangers from across the world.
Tuncay said: “To be honest, that number is huge and when I first heard it, it did sound impossible.
“It was really hard at the beginning but knowing that there was a treatment out there, we just had to try – we didn’t want to look back and regret that we didn’t.”
THE WORD SPREAD AND THE MONEY ROLLED IN
With the support of friends and family, Tuncay and Zeliha started raising money through a JustGiving page.
They also set up profiles dedicated to the campaign across a number of social media platforms including Instagram, TikTok, Twitter and Facebook which quickly reached people all over the world.
Tuncay said: “Metehan has supporters from everywhere now. 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. I could never make that much money myself so this is just unbelievable.”
Turkish communities in the UK promoted the campaign and organised
Knowing there was a treatment out there, we had to try – we didn’t want to look back and regret that we didn’t
fund-raising events across the country.
Atilla Uston, the chairman of the Luton Turkish Community Association, who co-ordinated the campaign, said: “We had run many campaigns and initiatives before, but nothing on this scale.
“We had fund-raisers 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.
“Young people got involved too, including one 13-year-old who raised a few thousand by doing a sports challenge from his home. Everyone got involved so Metehan could get this miracle medicine.”
‘WE CALL THEM METEHAN’S HEROES OR HIS ANGELS’
Tuncay was said he was blown away by the support and acts of kindness from strangers.
He said: “People were not only just donating, but they were also getting involved.
“I had a message from someone I didn’t 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.”
Thousands from the UK and beyond became invested in Metehan’s story and Tuncay said he is “incredibly grateful” to all of them.
He said: “We call them Metehan’s heroes or his angels – and even though I didn’t sleep for months while doing this campaign, I had massive support from those people – everyone has been so touched by Metehan’s story.
“We didn’t get a chance to go out and talk to people but social media has played a huge part in this.”
Tuncay and Zeliha also had great support from Metehan’s medical team, who they say became “family” to them.
Tuncay said: “Whenever we went to the LRI, doctors and nurses would ask how the campaign was going and how much has been raised – they really cared and I’m so happy with the support we got. We want to say thank you to everyone and wish we could get everyone together to celebrate.”
Metehan’s NHS medical team will continue to support him through the next steps of his journey.
Currently, Tuncay said the team are working hard to find out if the one-time treatment can be brought to the UK so Metehan can have it privately, at home.
If that isn’t possible, the family will have to travel to Boston Children’s Hospital in the US when travel restrictions allow.
While there is no cure for spinal muscular atrophy, Zolgensma should give Metehan the chance to live “a relatively normal life”.
Tuncay said: “We know that this will still be here forever but we wanted to give him the best life we could. Even though Metehan has been our priority, we still want people to know about SMA and will continue to raise awareness around SMA.”