‘Is there a cure?’ The doctor cruelly replied, ‘Yes, but you’ll never be able to pay for it, so you better plan on having another child.’: Online community raise $900k for boy with spinal muscular atrophy

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“It took me longer to write this story than I thought, because fighting for your child is overwhelming. One does not know where to start and how it all ends… but I had to start because I did not feel like there was a choice.

Let me start from the beginning. Me and my husband, Ruslan, were blessed with a little boy Yehor. We come from the Ukraine and we are a simple family: I am an accountant and my husband is a policeman. With these jobs, one earns about $300 a month in Ukraine. We were a simple but happy family. We were looking forward to having a child, playing games together, and having just as ‘normal’ of a life as it gets. But the first years of our life after Yehor was born turned out differently than we imagined.

First time mom takes photo of her son in his stroller with a fuzzy jacket on
Courtesy of Anna Kudriavska

We started noticing he had a tremor in his hands since he was 4 months old, but all the doctors told us was Yehor would grow out of it. Eventually we went to the most expensive private hospital there is in the Ukraine and the doctor voiced suspicion of SMA – spinal muscular atrophy. I will be honest, Ukraine does not educate well on orphan (or rare) diseases. I never heard of it. When the doctor was explaining to me what it is, I was terrified because I had no idea how I was going to cope. I knew I had to be strong for my son, because he could not see me all crying and desperate. When I asked the doctor if there was a cure, he told us, ‘Yes, there is. But you will never be able to pay for it, so you better plan on having another child.’ Even today, I cannot comprehend the cruelty of those words…

Little boy cries during rehabilitation exercise to help his spinal muscular atrophy
Courtesy of Anna Kudriavska

What is spinal muscular atrophy? It is a genetic disorder – genes responsible for muscle function are missing. There are several different types: with type 0, children unfortunately do not even make the 9 months inside the womb or die shortly after birth; type 1 children have significant issues moving and breathing and often do not live longer than 2-3 years; with type 2, children live longer for a fact, but the condition of the child varies significantly from one case to the other. Children cannot walk and most cannot sit, some have difficulty swallowing early on.

Spinal muscular atrophy is a progressive disease and over time a child can move less and less, limbs become disformed and eventually a person has difficulty breathing. In Ukraine, without any supporting treatment, children with SMA Type 2 die in their early 20s and for those 20 years they fight with non-existing infrastructure for disabled people. My son was diagnosed with Type 2; I was luckier than some other parents, but that did not mean I should not fight for my son to have the ability to walk and live longer than 20 years.

Little boy with spinal muscular atrophy lays in bed wearing a "future football star" shirt
Courtesy of Anna Kudriavska

I met so many wonderful people with SMA Type 2 since that moment. They had to learn to live with this condition because only 5 years ago there still was no treatment, but now my child had a chance of recovery. The moment I heard his diagnosis, I knew I had to do my best to take that chance. The above mentioned doctor was right about one thing though, we would never be able to pay for this new treatment….alone. This gene therapy called Zolgensma is a revolutionary treatment. It is one of three approved treatments for spinal muscular atrophy nowadays.

Unlike the other two treatments, it is not a lifelong treatment, but just one injection that replaces the missing gene. Lifelong treatments are expensive – 700k in the first year and 300-400k every following year. We knew we would never be able to find 400k every single year for medical bills. Additionally, these treatments are not replacing the missing gene, but provide support for backup genes. So, we decided to try and fundraise the necessary $2.3 million. I look into my son’s eyes every day and I cannot think of a scenario where I said, ‘This is too much, we are not going to try.’

Little boy with spinal muscular atrophy crawls on the floor during playtime
Courtesy of Anna Kudriavska

So, we started with an Instagram post and we got surrounded by so many kind strangers who became our volunteers and feel like family now. We have people helping us not only in Ukraine, but in Canada, USA, Germany, Belarus, and other countries. I still cannot believe the kindness we received on our journey from thousands and thousands of people. Today, we have raised more than $900k. This is a huge amount of money and all of this is due to people not scrolling by, but really reading our story and saving on something small to gift my child a long and healthy life!

Recently, we got some news that truly gave us a second breath! San Antonio Children’s hospital agreed to perform the treatment for $1.87 million instead, BUT only if the treatment is performed before Yehor is 2 years old. This means we have only about 2 months left to raise more than $900k more. This is the time to really pull it together, because our goal is closer than ever. If only 90,000 people saved $10 for Yehor, we could gift him something that many generations of people with spinal muscular atrophy can only dream about.

Yehor very hard works every day doing special rehabilitation exercises. He is a little warrior and I owe it to my son to do everything in my power to get him the necessary treatment. Because if I don’t, one day he will ask me, ‘Why did you not get me the treatment?’ and I will never be able to reply, “Because more people scrolled by than stopped when we tried to raise money.’ I truly believe in the kindness of people, especially after the last 10 months of complete strangers working nights, day in and day out to save my son.

Young boy with spinal muscular atrophy practices standing during a rehabilitation exercise
Courtesy of Anna Kudriavska

I will not lie, it is not always easy, we do not always get supportive messages. Declines and mean comments have become an integral part on this journey, but every single time it hurts like the first time. But then, I get a story of another mom in my inbox, who also has a sick child and we share how we cope with it and it becomes easier. In these moments, I truly know Yehor will get the treatment he needs to survive.”

You can donate to Yehor’s GoFundMe here.

Couple take photo with their son who is battling type 2 spinal muscular atrophy
Courtesy of Anna Kudriavska
Little boy with an alligator shirt on smiles for a photo while sitting in a white swing chair
Courtesy of Anna Kudriavska

This story was submitted to Love What Matters by Anna Kudriavska of Ukraine. You can donate to Yehor’s GoFundMe here. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories.

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