Real-life stories

Meet Nataliia


Nataliia and access to SMA medicines as an adult living with SMA


Nataliia brightens up when talking about how being on treatment with SMA medicines has changed her life. A 34-year-old English teacher from Ukraine, Nataliia is finally receiving treatment in the Czech Republic, where she recently resettled as a refugee.

Natalia was diagnosed with SMA when she was one, shortly before her older brother passed away from SMA at the age of 8. Growing up with SMA in Ukraine was challenging. The infrastructure was poor and people were unprepared. Schools would not take her in because of her disability and Nataliia’s teachers had to visit her at home. But as an adult, Nataliia leads a rather independent life. In Kyiv, she studied at university, worked, and comfortably moved around her neighbourhood in her power wheelchair. Because round-the-clock personal assistance is not fully reimbursed in Ukraine, Nataliia lived with her parents, but her friends drove her around for outings. Still, since medicines for SMA were first approved, she had dreamed of receiving one. Unfortunately, this is still a rare opportunity for adults living with SMA in Ukraine.

When the war broke out, beloved Kyiv became a dangerous place. Nataliia and her parents first fled to a nearby village, but the winter was scary and difficult under the bombing, without water or electricity. It was not possible to cook a meal, let alone for Nataliia to leave the house or be comfortable in a non-adapted environment. It was hard to receive medical care, and Nataliia was worried that if something serious happened, she would not find help. So, she and her parents made the difficult decision to leave as refugees.

Starting from scratch was hard, but with the help of local SMA Europe patient advocates, Nataliia and her family settled in a small Czech village. She now works online and financially supports her retired parents. Nataliia still travels back to Ukraine to see her specialists, but much to her joy, she was approved for one of the recently developed medicines for SMA in the Czech Republic:

In Ukraine, before the war, receiving medicines was like a dream. It was like a goal, but more like a dream. Because it was very difficult, especially for adults, it was almost impossible to get any kind of medicine for SMA. And here, when I got approved, I was so excited! It was amazing! So, I'm still happy about that. I felt some improvements very soon. And I still feel that I'm not getting worse. That's very important!

Being on treatment brought Nataliia hope at a dark intersection of her life. Just before the war tore Ukraine, she lost two friends who lived with SMA. One of them was a dear friend since childhood. As adults living with SMA in Ukraine, neither of Nataliia’s friends had had the chance to begin treatment with SMA medicines. These losses, therefore, feel particularly painful. Frustration adds to this pain because stabilising treatments for SMA now exist, but access for all does not.

Receiving a medicine for SMA brought Nataliia some hope for herself, her life and health. Still, the future feels uncertain. The war is still raging in Ukraine, and, in the current situation, moving back would mean giving up on receiving SMA medicines until the local government approves and reimburses them for all adults.


I feel like I have a chance. I have a chance to have a longer, happier life.

Nataliia’s future is still clouded with uncertainty, so, achieving access feels bittersweet. Nataliia had never wanted to leave Ukraine. She misses her friends. She feels that her freedom of movement is very limited because of inaccessible infrastructure in the small Czech village, where there are not many opportunities for entertainment. And she feels great financial responsibility towards her family. Still, times are not ripe for her to move back, yet. She wants to go home, but she will do it when she is sure to have access to her SMA medicine in Ukraine. As she patiently waits, she has one dream for herself and fellow people living with SMA:

I wish that everyone could get access to SMA medicines. Everyone. I feel that it's unfair that we have to rely not only on money, but on governments, insurances, or medical companies to receive treatment. It's unfair. I wish that everyone could get it.

Interview conducted on 24 February 2024

Adult age is still used as an exclusion criterion in SMA Europe member countries like Ireland, Finland, Denmark, Sweden and the Netherlands.

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