The story of Mariya
In 2017, I lost my 13 year old brother very suddenly due to a rare, previously undiagnosed brain condition called AVM. We had never heard of AVM before, but we later found out that it is an abnormal connection of veins and arteries. A bit like a large blood clot. It is though to occur at or just after birth. It often shows no signs or symptoms. Blood is forced through the AVM until it eventually bursts, causing a bleed. By then, the results are often fatal, as we sadly found out.
My brother was very clever and active. He showed no signs or symptoms of illness, so his passing came a a total shock.Â
One day, while at a martial arts club, my brother was sick, had a seizure and collapsed. He was rushed to hospital and there we found out that he had a bleed on the brain. He wasn’t expected to make it though the night, but he did. His brain was swelling and being crushed by his skull. The doctors decided to carry out a craniotomy, where they removed part of the skull to relieve pressure on the brain. It was a risky procedure and the doctors told us that he could die on the operating table, but we had to give him a chance. He survived the surgery and we thought that all was well. The doctors said that when he wakes up, he might be slightly disabled on his right hand side, but we thought, with the right help, he would overcome it. However, it would still be difficult to treat the actual AVM, which was deep in the brain. But 3 days after the surgery, he had a second, more serious bleed. The doctors said it was “unsurvivable.” Ten days after the first bleed, we he had to switch off the life support machines.Â
I was only 7 years old when I lost my brother, exactly 3 weeks before my 8th birthday. I had no real idea of what was going on. I never saw him in hospital because we thought he would get better and come home. It was very difficult suddenly not having him around. It still is difficult and always will be difficult. We used to do everything together, now I had to do it alone. We tried to keep things as normal as possible, but nothing would ever be normal again. I looked at my friend with their brothers and wondered why this happened to me.
We decided to do something to keep my brother’s memory alive and to help others. We set up a charity fund called “Another Star in the Sky” that aims to raise awareness of rare conditions such as AVM and to fund research into treatment and cures for rare conditions. To date, we have raised more than £15,000 and we hope to continue raising much more. More information on what we have done and hope to do in the future can be found on our “Another Star In The Sky” Facebook page.
Hopefully my big brother will be proud of what we are doing in his name. Life is still very difficult without him four years on, but I was blessed with a younger brother fifteen months after I lost my older brother. I like to believe that my big brother sent him to me.
To anyone who may sadly find themselves in a situation like mine, I would say “don’t give up”. It’s very difficult, but you can survive. I did. You can too.Â