My name is sevgi toz and i live in the uk. Ive recently started researching on SMA type1  disease (spinal muscular atrophy) which is a muscle wasting rare genetic disease. I have met a family in leicester whos baby age of 1 currently suffers with this disease and they currently have one of the biggest campaigns to raise money for his gene therapy to help save his life. Metehan does not have the time to wait for this medication but we can do this for other babies.

I have become part of Metehans campaign to help support them through this journey and raise a staggering £1.9m for the medication as its priced the worlds most expensive medication Which he will recieve in the USA. Unfortunately NHS currently does not offer zolgensma life saving gene therapy and babies are left to die.

later in march 2021 it will be decided if NHS will provide the gene therapy however even if they decide it will take a very long time to bring practice and make it available in the uk. I need your help to sign my petition to help save all babies who suffer with SMA which they can only receive before the age of two otherwise its too late..

these babies cannot feed cannot sit cannot play or walk and in fact barely have muscle movement and this medication fixes the damaged nerve which is seen that they can even possible learn to walk after receiving this one time dose medication.. will you help me give another chance in life to babies and sign this petition to save them before they reach the age of two? By signing this petition you will help zolgensma be considered to be made available in the uk and save a babies life!

Metehans campaign is currently running and we need lots of support to raise the £1.9m soon as possible as his condition is worsening and we do not want to loose him, we currently raised about £760,000 within two and a half months and still need £1.1m to save Metehans life, you can find details of his illness on his instagram page at @metehan_smajourney he has limited time and we dont want to loose him.. soon as we raise this money he will fly out to the USA and receive his gene therapy.. please share, raise awareness and donate if you can.

by bringing zolgensma to do uk we are not only saving lifes but we are avoiding more families trying to raise this ridiculous amount to save their childs lief...