‘There should not be a price for life.’: Mom determined to raise 2 million to save dying daughter with Type 1 Spinal Muscular Atrophy

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“Family usually knows us better than we think. That is definitely true for my husband Vasyl. His sister used to work together with me in retail and one day she said, ‘You should meet my brother, I know you will just click.’ I laughed. I was divorced and with a child at that time. I married young. After we had a daughter, my ex and I grew apart. He was and still is a good dad, we were just not meant together. So my skepticism was well-grounded. Finding a soulmate was nothing that was crossing my mind at that time.

Nevertheless, I guess I needed to do something different for a change, so I said, ‘Well, whatever. Then it is a date.’ She was right about the ‘click.’ It did just click. It never felt like he was new to me and my daughter. It felt like home and like he has always been there for us. After one year of dating, we started living together. There was no official ‘let’s move in.’ He was just always there when I needed him, spent loads of quality time with my first daughter Marina, and one day he just stopped going to his old place.

woman smiling and cuddling her with her then boyfriend
Courtesy of Irina

The same happened with our marriage. There was no grand proposal, but there was a mutual understanding that it is time for the next step: getting married. It was four years after we started living together and COVID was restricting any big parties, so we just had a small city hall wedding. But we had all the people who mattered on that day with us.

We knew we wanted a child, so we were on cloud nine when I saw those magic two stripes on the pregnancy test. Marina shouted that she wants a sister and everyone was just so excited to welcome a new member to our family.

Pregnancy was not an easy journey for me. First three months I was so sick, pretty much not leaving the bathroom. (Those who are going through this phase right now, my heart and prayers are with you. You´ve got this!) After four months I started feeling well again, but the happy pregnancy days did not last long for me. One day I started suffocating, I felt like the air was leaving my body. Vasyl took me in for emergency services and the x-ray showed pneumothorax, an abnormal collection of air between the lungs and chest wall that can lead to oxygen shortage and low blood pressure (thanks Wikipedia for the definition).

It can eventually lead to obstructive shock that can be fatal. It was a spontaneous pneumothorax. I never had lung disease or smoked. Doctors had to do surgery immediately and insert a chest tube. I almost died that day, but I guess when you are pregnant your body fights not only for you but also for your child. So, we managed. I was in the hospital bed for more than a month on observation. My main worry back then was the small child inside of me. I had to stay strong for her (we knew it would really be a girl back then).

Dana was delivered on January 20th, 2021 via a planned c-section, as pushing could cause pneumothorax again and that could be fatal during labor. I could not hold her after birth because the hospital put me under strong anesthesia. I also did not have anyone in the room during labor due to quarantine rules and rules for c-sections in  the Ukraine. I always imagined how lonely it must have felt for Dana those first hours of her life: her mom not being there, spending time in NICU as a precaution. The next day, when I got fully awake after the surgery and anesthesia, they brought Dana to my room. The moment when you meet your child for the first time is probably the most beautiful thing in the world. At that moment, you know that you would do anything for her. Absolutely anything.

dad meeting his daughter with SMA for the first time
Courtesy of Irina

The interesting thing is that Dana was born exactly 5 years and 5 days after I started dating Vasyl. I always believed that five was my lucky number, so I knew that this girl was born to grow up a great and very special person.

After a couple of days in the hospital, we took Dana home and we had some very happy sleep-deprived days. Marina has been a very responsible elder sister from the very beginning. She was also very helpful in the preparation of the baptism and the family party. That baptism party was very special to us as this was the first time that all the friends and family dear to us saw Dana.

woman with her family after the baptism of her daughter with SMA
Courtesy of Irina

When Dana was 2 months old, we took her to our scheduled check with the pediatrician. The doctor told us that she was too weak for her age and that we should see a neurologist. One week later in the neurologist’s office, we first time heard about the SMA and the suspicion this doctor had. I could not believe it, such a rare disease. Why us? So, I called our pediatrician and she said that it is too soon to say anything. She told us to get a second opinion, which we did. Another neurologist told us that it may be the complications during pregnancy and just the fact that she is a tiny little girl that causes some weakness. This doctor suggested we get a course of massages and see if it improves muscle condition.

One month of massages and exercise gave Dana nothing. On April 4th, 2021, our pediatrician told us we should get genetic testing done for SMA and on June 22nd, 2021 we got the final result that Dana had confirmed SMA Type 1 disease. When I got the confirmation about the diagnosis and explanation from the doctor, it felt like I was falling into the unknown. How could my little girl have such a disease? Why us? How can I save her?

sister playing with her baby sister with SMA
Courtesy of Irina

If there is a takeaway from this experience that I would like to share with other young parents: get your child tested the moment you or your doctor feel something might be off. It is always better to know earlier than later, even if what your doctor tells you seems highly unlikely.

Spinal Muscular Atrophy (SMA) Type 1 is a terrible disease, it is a rare genetic condition. NHS.UK website lists 4 types of SMA. Type 1 is the most severe type and as the website states ‘in the past children rarely survived.’ The muscles of our little daughter are dying instead of developing. All due to a missing gene. Eventually, the muscles that stop working are breathing muscles. Children die because they do not have the strength to breathe anymore.

Unfortunately, together with diagnosis, I had to learn that there are only three treatments available for this condition approved around the world. Two of them are life-long treatments (and very expensive ones, 250-600k a year) and one of them is just one injection that can insert a missing gene and stop the progress of the disease. This injection is called Zolgensma. And it is the most expensive one-off treatment in the world. It costs 2.05 million dollars.

We live in Ukraine. Here, our government pays for medicine (in theory), but it does not cover costs for so many things and one of them is the treatment that can save my daughter’s life. It is just too expensive. That is why the government is not approving this treatment so that they can say, ‘Well this is not an approved medication, so we cannot pay for it.’ There is no health insurance system. There is no structured way to save children like my Dana. They are too rare and too expensive.

baby girl with SMA using a ventilator to breathe better
Courtesy of Irina

Learning this was probably the most difficult part of our journey. Another devastating discovery for our family was that all of those charity funds that ‘help children’ do not help children with SMA. It is too high a sum of money to raise and the chances of success are not good enough for most of them. 60% to 90% of children with this disease die before the age of two (different sources give different percentages). To be honest, for a moment there I lost hope. Was I really going to lose my daughter? I remembered the moment when I first saw her and that I said that I would do anything for her. So I had to do everything for her. Even if that meant raising 2 million dollars.

After this news started spreading, we got so many family members, friends, and volunteers writing us and telling us that we can raise this amount of money, that we are not alone. There should not be a price for life, but if the situation is that there is literally a bill that can save my little Dana, then we will try and pay for it. We have people who we never met organize charitable fairs for Dana, sacrificing their free time, time with their partners, children, and friends to help my daughter. The kindness of people around the world is what keeps me going every day; it gives me the strength to ask for donations and for help.

Dana is 10 months old now and we have raised 18% of the sum (above 350k dollars) since we learned about the diagnosis in June. For a normal family like ours from a rather poor country, this is an incredible amount of money. We remain hopeful that we can raise the remainder.

baby girl with SMA chewing her finger
Courtesy of Irina
baby with SMA smiling and giggling
Courtesy of Irina

To be honest, without volunteers none of this would be possible. Taking care of the child with SMA is a 24/7 job. I cannot leave her alone because Dana cannot move around, cannot move her head, and she is too small to understand what is going on. I am always scared that muscles responsible for swallowing will malfunction and she will start choking on her spit or have difficulty breathing. Dana needs occasional support with a ventilator because her muscles are just too weak for this seemingly basic bodily function.

She is 10 months old, but she cannot even hold her head for longer than 10 seconds. It always breaks my heart when we go outside to the playground, to see children of her age starting to learn how to stand and walk and my Dana just watching them helplessly. I want to give her the possibility to discover the world, but most importantly I want to give her a chance to live a long life. To live it the way she chooses to.

If you would like to support Dana, you can go to our GoFundme campaign, support via PayPal ‌at iraonischuk@ukr.net, or you can check our Instagram for our progress and ask any questions you may have. I am happy to answer any questions, whether they are about the fundraiser or SMA disease.

Believe in your children and believe in yourself. You can do anything you put your mind to, even if the task seems impossible at first. That is why we are parents: to be their heroes. I hope that one day Dana knows that I did everything I possibly can to help her live the life she does.”

baby smiling and being held by mom closely
Courtesy of Irina
mom and dad posing with their baby daughter
Courtesy of Irina

This story was submitted to Love What Matters by  Irina from Ukraine. You can follow her journey on Instagram.  If you’d like to, donate to her GoFundMe, or PayPal via:iraonischuk@ukr.net. Submit your own story here, and be sure to subscribeto our free email newsletter for our best stories, and YouTube for our best videos.

Read more stories like this:

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‘I asked my parents, ‘Why am I not like all the other kids?’ to which they replied, ‘That’s just how God made you.’: Young woman with Spinal Muscular Atrophy pursues career, ‘I found a way to make life happen!’

‘The doctor said, ‘She won’t turn 18. I recommend having another baby.’ My muscles betrayed me.’: Woman details journey with Spinal Muscular Atrophy, ‘Find your inner strength’

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