Viral challenge raises incredible 9mln PLN for one the world’s most expensive drugs to save toddler’s life
An 18-month-old baby suffering from a rare and fatal disease could soon be cured after an online challenge went viral and raised over 9 million PLN to cover the cost of treatment.
Little Wojtek Howis from the village of Galewice was born with Spinal Muscular Atrophy Type 1 (SMA), a rare genetic disorder affecting the nervous system and muscles, and found in only one in every 10,000 people.
Parents Izabela and Paweł first noticed something was wrong when, straight after being born, they realised he couldn’t move his legs or left arm.
Doctors hoped he would recover after rehabilitation but after six weeks and genetic tests the toddler was diagnosed with the disorder which not only causes motor neuron death and muscle wasting but also affects the respiratory system leading to death.
Distraught Izabela and Paweł, who have another four-year-old son called Szymon, said: “Step by step, the disease weakens the muscles and takes away the motor control over them. It starts with those responsible for movement and ends with the heart muscle.
“How to look at our very lively four-year-old son and Wojtuś, who was strapped to his bed - numb and only moving his wonderful eyes. No words will describe the despair that accompanies us every time our older son asks ‘Mom, Dad, when will Wojtuś play ball with me?’”
In May last year a new experimental drug designed in the United States which interacts directly with the damaged gene became available.
But costing two million dollars, the one-off drug, Zolgensma, was well out of their means.
They said: “It is said that this is the most expensive drug in the world because it costs over two million dollars. For Wojtuś and other children with SMA it offers enormous hope for a normal life without all those tubes and equipment.
“The problem is, it has to be administered before a child turns two or ideally as quickly as possible after the diagnosis so that the illness doesn’t destroy the child’s body too much.”
Izabela and Paweł began gathering funds four months ago, but their efforts almost came to a halt during the pandemic.
Just as they were beginning to lose hope fireman Marcin Topór from the neighbouring village of Gaszyn came to the rescue.
Recording himself doing 10 push-ups he then posted it on social media under the hashtag #Gaszynchallenge and nominated five people to do the same to help raise money for the treatment.
Now the challenge has gone viral and raised over 9 million PLN (around 2.3mln USD) with everyone from firefighters, police, soldiers, prison guards, civil servants, foresters, shopkeepers, bank employees, factory workers, farmers, farmers’ wives associations, bakers, individual families, and even groups of wedding guests taking part.
Writing on the fundraising website, Wojtek’s stunned parents thanked everyone involved, saying: “What seemed impossible just a few weeks ago has become reality today!
“After 123 days of collection, we managed to collect the entire amount needed to buy the most expensive drug in the world for Wojtuś! You are great!”
Proud Topór posted on the challenge’s fan page Napompowani: “All the people who put on their hero suits every day (firemen, policemen, officer, clerk, builder, worker) are with us.
“I will do everything in my power not to waste this potential and show that helping others is great!”
The additional money raised will be used to help other children in need.
The website is here.