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My husband and I married two years ago in Klevan, Ukraine and had planned to have a baby together, but my pregnancy in 2020 wasn't the easiest. Until the fifth month, everything was normal. Then, one of my lungs collapsed and I almost died. Doctors had to put a drainage tube into my lungs and I spent some time in hospital. We were told then that any oxygen shortages may have impacted my baby's brain development, and that we may see that when she was born. But there was no indication of physical problems, she was very active in the womb and kicking a lot.
A cesarean section (C-section) was recommended to us because doctors were afraid that my lungs would rip during contractions, but Dana seemed healthy when she was born on January 20, 2021 and we were delighted.
It was only during her two month check up that doctors noticed she wasn't capable of holding her head up at all. At the time, they suggested it could be to do with lung problems during my pregnancy or that during the C-section, the anesthesia may have been too strong and, in turn, made Dana weaker. So, she was given physical therapy and calcium to make her bones stronger but two months on, she was not getting any better. At that point, we were told to undertake genetic testing for spinal muscular atrophy (SMA) and on June 22, we received the results: Dana has SMA type 1, the most severe form of spinal muscular atrophy, a genetic disease. It was terrifying, and that feeling just doesn't go away.
We immediately went to a hospital in Kyiv, where doctors said that without treatment the prognosis for Dana was very poor; children with SMA who have no medical intervention usually do not live past two years old.
There are only three approved treatments available for SMA, which are nusinersen (Spinraza), onasemnogene abeparvovec-xioi (Zolgensma) and risdiplam (Evrysdi). Our options were paying for ongoing treatment with Evrysdi or one off genetic therapy Zolgensma, which we have been told will cost between $2,000,000 and $2,300,000.
So, in the first few months after her diagnosis, Dana did not have any treatment because we couldn't afford to pay for Evrysdi either. But then we contacted the company who makes the drug and thankfully, Dana has been taking Evrysdi since. Now, she can hold her head up herself for 10 seconds and though she could previously only lift her arms to shoulder level, she can now lift them up to head height.
Dana is 13 months old now and regularly has physical therapy, so on February 22, my husband and I took her from Klevan to Poland for therapy there. We left my 10-year-old daughter Maryna in Ukraine with her father, but when I think back now, I realize I had a really bad feeling leaving her behind. I hugged her goodbye and even took a picture of her standing next to the window, waving at Dana. I never usually take that kind of picture, but it really felt like something was "off" that day. Maryna even ran behind the car as we left, which is something she doesn't normally do.
Then, in the very early hours of February 24, I received a text message from Maryna saying: "Mom, there is a war and I'm really scared." I remember immediately thinking that Maryna's passport had expired and that she may not be allowed through the border to Poland, so that day, we tried that day to get her an emergency travel document, but everything had closed. Fortunately my sister, who has children herself, agreed to drive Maryna to the border, but her car broke down en route and she was forced to pass Maryna to people from the city, essentially strangers, to continue the journey to the border.
Maryna had to wait with them, in a car, for 48 hours, and for those two days I couldn't eat and I couldn't sleep; Maryna was writing to me constantly telling me how scared she was. Eventually, she was allowed to cross the border on foot, in the cold.
The four of us are now together in Radom, Poland. We rented a small, one-bedroom apartment because we thought we would be here for one month. But now, we're here with two kids for the foreseeable future. We haven't claimed refugee status yet, we are just trying to get some documentation so Dana can get access to treatment here. The medicine she takes was distributed from Kharkiv in Ukraine, which is currently under attack, and we only have enough left for two more weeks now we're in Poland.
The only treatment here we can get is Spinraza. As of yet there is no timeline for getting Dana's Evrisdyi medication to us in Poland, but we understand that Spinraza is accessible to anyone in Poland who is working and who has the correct medical insurance, so my husband is trying to get a job here that will allow that. That work will also support us financially, and I will try and find a cleaning job for several hours in the evenings.
If Dana doesn't get treatment for a few months, she could lose all the progress she has made. And her condition will likely get worse. Dana is relatively weak, even with treatment because she has the most severe form of SMA. We know that, for her, breaks in treatment are really not an option.
I think Dana understands that she needs a bit more attention than other children; that she needs to be held all the time, because she will just lie there and play with her toys, almost as if she is helping me to get through this. She has a very kind, calm personality.
So my immediate family is here in Poland, but my parents and my husband's parents are still in Ukraine. Since we started the fundraiser, our family has also extended to all the volunteers who have helped us raise money for our daughter. The main organizer of the fundraiser is living in Kherson, which is currently occupied by Russian forces. She has told us it is dangerous to go on the streets there to get food. Another volunteer lives in Kharkiv. We are trying to help them now, just as they have helped us. Our parents are offering to provide shelter to their families if they need it.
I'm really scared to think about the future. I'm afraid of tomorrow because Dana has so many challenges. She has war on her doorstep and in the nine months since her diagnosis, we have raised a total of $675,000 towards the Zolgensma treatment. It's a huge amount, but it's not nearly enough, even though we have now been able to find somewhere in the United Arab Emirates (UAE) that offers the treatment for $1,855,000. Unfortunately, we haven't been able to work out the details with this hospital yet, as we received this information one day before the war started. So, we are currently working towards treatment at The Children's Hospital of San Antonio in Texas, which will cost us $2,050,000. However, we also hope to work out the details around the treatment offered in the UAE soon.
Something I started to appreciate, even before the war in Ukraine, was every day that my child can breathe. It's something I don't take for granted. There have been moments when she has had difficulty breathing; she even had pneumonia at one stage and was in intensive care. I think we all need to appreciate the fact that, today at least, we can breathe.
Before, thoughts crossed my mind about moving abroad. Now, I just want to go back home. I have really started loving my country in a new way. The only thing I don't understand is why my 1-year-old has to fight two wars at once? Why does she have to fight spinal muscular atrophy and have war in her country at the same time? Why do some children have to go through such challenges?
Iryna Pradunets is a Ukranian currently living in Poland with her husband and two children. You can find out more about how to help her daughter, Dana, here.
All views expressed in this article are the author's own.
As told to Jenny Haward.
Interview translation provided by Mariia Hesseler.
