By IRYNA PRADUNETS
Terminally ill kids in Ukraine – Bing video
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 months checkup 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 also 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. However, her car broke down on 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.
Ukranian Dana Pradunets is only 1, but has type 1 spinal muscular atrophy
and needs life-saving treatment.
IRYNA states, The only treatment here we can get in Ukraine 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.
READ MORE:
Ukrainian Brothers Set for American Adoption Separated in Heavy Attacks
Group Wearing Ukrainian Flag Reportedly Pray At Western Wall in Viral Photo
Community Rallies to Support Ukrainian Bakery, Raising $72,000 in Donations
‘I’m in Ukraine, We Are Living in Fear’ (newsweek.com)
All views expressed in this article are the author’s own.
As told to Jenny Haward.
Ukraine war: Hospital struggling to prepare for Russian advance
Medics at a pediatric hospital in Zaporizhzhya make preparations
as they brace for a Russian assault on the city in eastern Ukraine.
Zaporizhzhia, Ukraine – Two weeks ago, Nastiya left her town of Vasylivka in eastern Ukraine to bring her five-year-old son Volodymyr to a hospital in the city of Zaporizhzhia, further north.
The boy was suffering from internal bleeding and was in a critical condition.
He has since improved but the mother and son cannot return home. On February 24, Russian President Vladimir Putin ordered troops to attack Ukraine by air, land and sea. Ukraine’s resistance has been fierce, repelling attacks on the capital, Kyiv, and other major cities, but battles have intensified in recent days.
Vasylivka is one of the towns that are being heavily fought over by defending Ukrainian forces and advancing Russian troops. People who attempted to enter the town to deliver aid told Al Jazeera they were turned back by the Ukrainian army because of the Russian shelling. “Of course, I’m worried, I have three other children at home,” Nastiya told Al Jazeera’s Charles Stratford, standing beside Volodymyr’s hospital bed.
“There has been shelling and they are hiding in the basement.”
Elsewhere inside the hospital, newborn babies in incubators line the corridor. (Al Jazeera)
Doctors have moved them here to shield them in the case of Russian shelling.
“This area is protected from shrapnel if there is a blast so we put the babies here,” explained Vyacheslav Kapusta, a doctor at the hospital.
“It is deep inside the building between two walls.” In the hospital’s cold and damp basement, staff are preparing beds for a possible transport of patients.
“They all have terminal diseases,” Igor Buiny, an anesthetist, told Al Jazeera
from inside the intensive care unit.
“They are incurable so we have to leave them here in case of an air alert because they are dependent on oxygen and resuscitation equipment and we cannot transport everything necessary for them there.”
Outside the hospital, volunteers are filling sandbags to strengthen doorways and protect the windows if shells explode nearby.
As Russian troops move further into Ukraine, civilians have been organizing to
help fight alongside Ukrainian soldiers, the pace more urgent since the army said
this week Russian tank columns are less than 40km (25 miles) away.
Armed volunteers are also ready to be taken to positions around the city,
and more men and women arrive, waiting to sign up to fight.
“I don’t want my family killed. I won’t allow them to march on our land.
They are the occupiers, and they should be eliminated,” one man told Al Jazeera.
Russia insists its forces are only targeting military infrastructure but reports from
the ground suggest a mounting civilian death toll.
💪There are many things that seem impossible to those that don’t attempt them 💪
Russia and Ukraine meet for talks after both set out red lines — and room for compromise
Ukraine’s foreign minister says Russian shelling holds 400,000 ‘hostages’ in Mariupol
We are in a war: A Leadership War – And NOT With The People 0f Russia.
‘WE ARE GOING TO DEFEND OURSELVES’: UKRAINIANS JOIN WAR FRONT
HOSPITAL STRUGGLING TO PREPARE FOR RUSSIAN ARMY ADVANCE
FIGHTING FOR SURVIVAL, BABIES IN THE BUNKER | EXPRESS.CO.UK
Are there really neo-Nazis fighting for Ukraine? Well, yes — but it’s a long
Russian Americans in Las Vegas face backlash over war in Ukraine
Russia Ramps Up Attacks After Deadly Hit on Maternity Hospital
Russia Says They Won’t Overthrow Zelensky, Occupy Ukraine
What to do if a worst-case nuclear scenario actually happens
Here’s where US oil and gas supplies come from
Ukraine maternity hospital bomb