It seemed impossible at first, but we made it happen
Interview with Karina Prokopiuk, co-founder of the Ukrainian Association Crystal People.
For Rare Disease Day campaign 2026, Karina agreed to share her experience with us, being the mother of a children with OI.
Can you share your experience with balancing personal and professional life with a child with OI?
Balancing motherhood and professional life with a child who uses a wheelchair requires maximum organization and patience. A younger child needs significantly more attention and involvement. Such parents and such children do more every single day than others: they work more, plan more, and think through every step more carefully in order to live a full life.
In order not to dissolve entirely into caregiving, in my case I am pursuing a new education and mastering a new profession. This has become not a loss, but an opportunity. Perhaps without these circumstances, I would never have dared to make such changes. Now it opens more professional opportunities for me and gives me a sense of growth.
What advice could you give to other parents of children with OI?
I would advise parents not to be afraid to gradually teach their child independence, even if it feels scary or unrealistic — through small tasks and daily steps. Allow them to try, support them, but do not do everything instead of them. It is also essential to advocate for an adapted environment for your child: ramps, elevators, accessible schools — these are not privileges, but necessities. Without support from municipalities, educational institutions, and the state, such families risk remaining in a closed circle of limitations.
Karina Prokopiuk, Mariia Kalashnikova, Lyubov Petrova: co-founders of the Ukrainian Association
How does your organization helps other families with OI?
Our association continues to work in Ukraine even under wartime conditions and provides informational support to patients about children’s treatment in Ukraine as well as in other countries to which families are forced to relocate because of the war. As the issue of accessible space and proper treatment has been part of our advocacy work for many years. The lack of an accessible environment remains one of the biggest challenges that parents of children with musculoskeletal conditions face every day.
![[Image shows a gouache/ink/pencil cartoon illustration I made in my sketchbook. Against a black background, a yellow orb frames an illustration of me sitting on the floor, crooked white femme with glasses and hair in a messy bun. I look down lovingly at the ghost of kid-me sitting in my lap, and hold the back of her head gently. She looks back at me and holds juniper (fluffy black cat) in her lap. Around the orb is abstract decorative designs of yellow vines, sparkles, and dots.]](https://oife.org/wp-content/uploads/2021/11/Haley-Brown-illustration-300x236.png)
