This is the last chance to save baby Leon’s life

My name is Anna, and I am organising this fundraiser on behalf of Leon’s mum - Marta, who has been desperately fighting for his life in Poland for the last two years. Leon is running out of time and if they do not raise the full amount for the treatment in the coming weeks it will be too late.

When Leon was born on 1st April 2021 in Poland everything seemed to be normal at first. Very shortly after he arrived home from the hospital, his parents noticed that Leon wasn’t as mobile as other babies and they had a feeling deep inside that something wasn’t right. Time was passing and the anxiety was growing. They found a paediatrician who referred them to the hospital where the worst nightmare of their lives began. On June 2nd, 2021 their family's life changed forever. In the hospital corridor, Leon’s parents were told that their two-month-old son suffers from a genetic disease - SMA type 1, the worst form of spinal muscular atrophy that causes his muscles to die every day. This disease has horrifying stages. It takes away the strength of the muscles and the ability to swallow and breathe. Without proper treatment, it can lead to death from respiratory failure normally before a child reaches the age of two. In Poland, Leon can only receive a drug that slows down the progress of the disease. This medication needs to be taken straight into the spinal fluid for the rest of his life. No treatment can undo the damage SMA has already done to Leon’s little body. There is however drug that could save his life and with a single dose could stop the progression of the disease and help Leon develop normally. Unfortunately, the drug (Zolgensma) is one of the most expensive drugs in the world and is simply out of reach for any family. Recently, the Polish government reimbursed Zolgensma, but it was decided that only babies under six months would qualify for it. Can you imagine this feeling when you find out that a group of politicians have decided that your beloved baby is just a few months too old to get a drug that can save his life…

From the moment Marta found out about Leon’s diagnosis as any loving mum, she started the battle for her son’s life. She started fundraising for money in any possible way she could. She got support from many incredible people. There is a Facebook page set up for Leon with over 18 thousand members. Hundreds of auctions and fundraisers have been run online, people have gone out on the streets to collect money and multiple charity events have been organised. As a result of the incredible response from the public, over 80% of the amount needed has already been collected but it took almost two years. Unfortunately, Leon’s time is running out as the drug can only be given to babies with a weight below 13.5kg. Leon will only qualify for this criteria for another few weeks and this is not enough time to end the fundraising in Poland. No one can imagine what it must feel like for a mother that instead of being happy that the baby is growing and putting on weight, all she feels is fear. In a world where money and high-up people decide who should or shouldn’t get a chance in life, all we can do is support each other. There is still £200k missing and I am desperately begging you to help us in collecting it and saving Leon’s life.

I also have included the link below to the Polish fundraising website in case someone would like to pay directly.

https://www.siepomaga.pl/en/leon-sma

Please help me save his life.