International Pompe Association supports Ukrainian Pompe patients

Category: Archive
March 20, 2022

Author: Maryze Schoneveld van der Linde, Volunteer, Communications Coordinator, International Pompe Association

Date: March 19, 2022

On February 24, 2022, at 5 am in the very early morning, I woke up to a WhatsApp message that vibrated. One of the mothers of a Pompe child messaged: ‘We woke up to explosions and the sound of planes’.

I think it was one of the most unrealistic messages I ever received.

Despite their fear, and totally unknown, the family who ‘woke me up’ packed to go to hospital as their little girl should receive her infusion that day. While they were driving I received another message: ‘Maryze, we are driving towards Kyiv, but there are many many cars leaving Kyiv’. The dedication to get treatment for their daughter is so strong that the family continued driving to the hospital. That day the hospital advised them not to return home, but to stay in hospital. Mother and daughter had to stay the night in the hospital shelter.

From the moment I woke up at 5 early that morning, I contacted the other Pompe families in Ukraine. I mapped out where they were located: Lutsk, Kyiv, Cherkazy, Dnipro, Odessa. The following days we had much communication; we informed each other; reassured each other and I learned what people wanted.

Four families decided to leave Ukraine, to ensure their children could continue their treatments, and to make sure they are safe. Destination addresses were given to me. I was happy to know where they were going. Two families decided to stay for various reasons. They reassured me they had enough supply of ERT and could get the treatment closer to home, so they didn’t need to travel for long.

Some mothers went alone with their children in the back of the car; driving to Italy and Poland. The family of the little girl had no family abroad and I invited them to come to the Netherlands. They could stay with my family, and meanwhile I would look for housing.

While everyone was driving through a country in war, I informed the Sanofi team about which patients were leaving, and to where they were travelling. Sanofi could then prepare everything to make sure the patients would get their treatments in time. The hospitals in Poland, Italy and the Netherlands were notified and prepared to receive their new patients.

I contacted the physicians in the Netherlands and we exchanged all necessary information. The Dutch Pompe specialist was contacted by the Ukrainian physician in Kyiv so that medical information could be shared. My physician asked people in her neighbourhood if they had a place to stay for this family. I live two hours drive from Rotterdam, so it would be best if the family finally could get housing in Rotterdam. I was so happy when I heard a family volunteered to provide housing not far from the hospital.

On Thursday March 3, the family with the baby girl crossed the border with Poland. They let me know by sending a picture of them passing it. I had tears in my eyes. They were safe.

Another mother with 3 children already arrived safe in Bulgaria and was on her way to Italy where her husband is employed.

On Saturday the 5th of March, a car with Ukrainian number plate entered my street. The fully packed car was dirty, but the people inside beautiful. We all shed tears. Finally they arrived!

While they stayed in my village, people heard about this family and donated money for them. It was clear that money was needed. A week before the father of the family had a job and suddenly had no income anymore. It was also clear that the whole situation had a high impact on them: a sick child, leaving their beloved country to to save their child, leaving their parents, brother and sister. I can’t even imagine it, if it was to happen to me.

The family left for Rotterdam as their child would receive her treatment there, on March 9th. The physician was well prepared thanks to the information from the Ukrainian physician in Kyiv.

On Thursday, March 17th, the two children of the Odessa family received their first infusion in Florence, Italy. Again wonderful news.

Next week the children of the Ukrainian families who went to Poland will get their first treatment in Warsaw,  Poland.

It’s wonderful that all countries, Sanofi employees, patient organisations, doctors and individuals are so cooperative and supportive. It shows that when we work together, caregivers and patients, patient associations, doctors and industry, we can make a difference because ‘Together We Are Strong’!

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