Aliye Mehmet has launched a fundraising campaign in Britain to help raise $2 million for lifesaving treatment for her niece Asya.
The 8-month old toddler suffers from Type 1 SMA, or spinal muscular atrophy, a rare neuromuscular disease that severely debilitates the body.
Babies with Type 1 SMA have severe problems moving due to their floppy, weak muscles caused by a defective gene.
As the disease progresses, babies are unable to raise their heads or sit without support, and struggle to eat, breathe, and swallow. If left untreated, the condition is usually fatal with many infants failing to live beyond the age of two.
Asya Polatlı was diagnosed with Type 1 SMA when she was two months old. She is currently on a ventilator to help her breathe, and is fed via a tube into her stomach to prevent her from choking on her food and saliva. She is unable to move her legs and has very little movement in her arms.
Asya’s family, who live in North Cyprus, are desperate for her to be treated with Zolgensma, a pioneering new medicine being administered in the USA that is generating incredible results for many SMA babies.
Zolgensma is a gene therapy treatment that helps stimulate the body to produce the survival motor neuron (SMN) protein. It is the absence of this protein which adversely impacts cells and in turn bodily functions.
Unlike other invasive procedures, which require painful and risky lumbar punctures, Zolgensma is administered just once.
Novartis, the makers of Zolgensma, apply strict criteria to ensure the drug is effective. Children must be under the age of two and weigh less than 13 kilos.
The UK recently approved the use of Zolgensma on the NHS. For baby Asya in North Cyprus, however, her only chance to receive this vital drug is for her family to privately raise the funds – a staggering $2 million.
Asya’s parents, father Ozan and his wife Güler Polatlı, have launched a fundraising campaign in North Cyprus and Turkey. They have got Vodafone Telsim backing the appeal, allowing people to donate via text message.
Aliye is aiming to match their effort by raising £1 million in the UK. She told T-VINE:
“My brother [Ozan] and his family are doing everything they can to raise awareness and find the funds needed for lifesaving treatment for Asya, who is suffering with Type 1 SMA, or spinal muscular atrophy.
“We are raising money for a gene therapy treatment called Zolgensma, which may be her best chance for a more normal life.
“I hope the Turkish community can get behind this appeal, like they did for baby Metehan last here. Every donation offers a lifeline for baby Asya.”
People wishing to donate can do so via GoFundMe, or they can make a transfer in to a Turkey or TRNC bank account.
How too donate to Baby Asya’s fundraising appeal
GoFundMe Baby Asya campaign: https://gofund.me/5738abe6
If in the TRNC text ASYA and send to 6474. Every SMS sent will generate a 20TL donation.
Bank transfer for Asya Polatlı
TR24 0006 4000 0026 8040 1776 19 (EURO)
TR07 0006 4000 0016 8040 1475 69 ( TL)
TR13 0006 4000 0026 8040 1776 23 (STG)
TR41 0006 4000 0026 8040 1776 04 (USD)