I wasn’t going to let Zita Desa get away with not writing a post. She is my mom after all. Read more below!
Hello, my name is Zita Desa and I have the privilege of being Mark’s mum.
Looking back Mark has always been a quiet child with a great sense of humour.
Mark has already shared with you his personal journey some of which I was not aware of. All I can say is that he has always been respectful, getting his point across with humour.
Our “Annus Horribilis” started in 2015. Since Mark was away a lot for his job and came home late, we did not witness his symptoms. I am grateful to his friends and work colleagues who witnessed a lot of what he was going through and for urging him to see a doctor.
The diagnosis was a total shock. The word “Ataxia” was a foreign word to us. We did not know of any family member who had it.
We have got some information from the doctors through the initial tests but our main source of information has been Mark. Because he was around us a lot more after quitting work, I became aware of his depression, his speech pattern, and imbalance issues.
Mark did not stay put after the diagnosis. He empowered himself with information on diet and exercise. His Karate background has greatly helped. We have tried to support and help as best as we can.
Through his personal involvement, Mark has found a mission. That has been his saving grace. By co-establishing “HOPE FOR ATAXIA”, all his past experiences on his old job and his life have come together. No more is he concentrating on himself but helping others. It has opened up his mind and heart.
He is a much happier young man these days, learning new ways to help,
organizing talks with professionals etc. He has established new relationships with fellow Ataxians, learning their struggles, appreciating his own blessings. In that, he has found his true purpose in life. He is not prepared to lay down and die and is a source of inspiration.
All we want as parents is the “very best” for him. We are truly blessed to have him as our son & will continue to do all we can to support him in his dreams and efforts to help others.
We are rooting for Mark all the way.
Thanks, Zita Desa, for sharing your story!
Please consider sharing your story – whether you have Ataxia, are a caregiver, friend, or relative. You may fill out the form below to get started.