Pontefract barber is raising funds to help save the life of three-year-old Nilay

Pontefract barber Max Guven is raising money to help a little girl living with a life-threatening condition.

By Julie Marshall
Wednesday, 19th January 2022, 3:18 pm
Updated Wednesday, 19th January 2022, 3:20 pm
Pontefract barber Max Guven

Three-year-old Nilay who lives in Adıyaman, Max’s home city in southeastern Turkey, has spinal muscular atrophy (SMA) an inherited disease that affects nerves and muscles, causing muscles to become increasingly weak.

Max, of Best Cuts Styling at The Circle, Pontefract, said: “I saw a post on Facebook about Nilay and when I realised she was from my home city I decided to do everything I could to help.

“Her family in Turkey have launched a campaign to raise money for her treatment.”

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Three-year-old Nilay has a life-threatening illness.

So far the appeal has raised almost €85,000 but that is only six per cent of €1.9 million needed for the specialist treatment Nilay needs to save her life.

Max said: “The medication she needs to get better is called Zolgensma which is not available on the Turkish NHS.

“It is available from the Elcezire Hospital in Dubai and is very expensive.

“When Nilay was one-year-old she got an infection and she stayed in intensive care for five-and-a-half months.

“While there she lost one of her lungs and the remaining lung only works at 50 per cent what it should do.

“Since she was diagnosed with SMA she can’t eat solid food and she is now fed via a tube and she has no sense of taste.

“This is how she has lived for the past two years.”

Max has already raised £1,000 for Nilay.

Nilay has Type 1 SMA, the most serious form of the condition.

There is currently no cure for SMA although research is ongoing to find possible new treatments.

Max said: “Doctors have been weighing her and she is 12.5kg at the moment.

“The family have said that if she reach 13.5kg then she will die so they have been trying to keep her weight down by fasting.

“Time is running out for Nilay.”

You can visit Nilay's Facebook page here for more information.