Aleksandra Blagunovski
Fundraising
Parenthood did not have an easy start for us. Our son Martin had difficulties breathing at birth and we were immediately separated before we could even touch or hold him, so he could receive emergency medical care. We felt very alone for days, waiting for an update on Martin from the hospital, and desperately hoping that everything would be alright in the end.
Thankfully, Martin stabilised but things were not alright. For almost a year we were in and out of the hospital, trying to get his seizures under control, struggling to find answers, and being constantly separated as a family. Doctors finally made a diagnosis of Schinzel-Giedion Syndrome almost a year later. However, they told us that as they didn’t know anything about the syndrome, they could not help us. Honestly, we were broken. We researched Schinzel-Giedion Syndrome ourselves on Google and most of the limited medical information we found was heartbreaking to read and didn’t help, but thankfully through this searching I also discovered The Schinzel-Giedion Syndrome Foundation, and this felt good – it felt like we were finally home.
Our life is still very stressful and challenging. Martin is still struggling with different types of seizures and anti-epilepsy medications do not seem to help. However, the courage and confidence we have gathered from the Schinzel-Giedion Syndrome Foundation and from other families on our Schinzel-Giedion Syndrome Family Support Group on Facebook have helped a great deal and Martin is now a happy little boy.
Once we understood the enormity of what were we dealing with, we knew what we needed to do as parents to help him on his journey and keep him healthy. When Martin had his first laugh it was the most beautiful moment of our lives. I feel such joy being his mom and I feel proud and privileged to be his advocate through thick and thin. He always bounces back from every medical challenge; he is my biggest strength.
I feel so grateful for our community and I am honoured to join the Board of Trustees at the Schinzel-Giedion Syndrome Foundation, advocating for our children and their families. I believe that awareness, support, and resources can change lives. By sharing our stories, supporting each other, and pushing for change, we are creating a brighter future for everyone affected by Schinzel-Giedion Syndrome.
Thankfully, Martin stabilised but things were not alright. For almost a year we were in and out of the hospital, trying to get his seizures under control, struggling to find answers, and being constantly separated as a family. Doctors finally made a diagnosis of Schinzel-Giedion Syndrome almost a year later. However, they told us that as they didn’t know anything about the syndrome, they could not help us. Honestly, we were broken. We researched Schinzel-Giedion Syndrome ourselves on Google and most of the limited medical information we found was heartbreaking to read and didn’t help, but thankfully through this searching I also discovered The Schinzel-Giedion Syndrome Foundation, and this felt good – it felt like we were finally home.
Our life is still very stressful and challenging. Martin is still struggling with different types of seizures and anti-epilepsy medications do not seem to help. However, the courage and confidence we have gathered from the Schinzel-Giedion Syndrome Foundation and from other families on our Schinzel-Giedion Syndrome Family Support Group on Facebook have helped a great deal and Martin is now a happy little boy.
Once we understood the enormity of what were we dealing with, we knew what we needed to do as parents to help him on his journey and keep him healthy. When Martin had his first laugh it was the most beautiful moment of our lives. I feel such joy being his mom and I feel proud and privileged to be his advocate through thick and thin. He always bounces back from every medical challenge; he is my biggest strength.
I feel so grateful for our community and I am honoured to join the Board of Trustees at the Schinzel-Giedion Syndrome Foundation, advocating for our children and their families. I believe that awareness, support, and resources can change lives. By sharing our stories, supporting each other, and pushing for change, we are creating a brighter future for everyone affected by Schinzel-Giedion Syndrome.
