Hi I am Tasia Rechisky, a 24 year-old Boston University graduate and now full-time employee living in Massachusetts. From the outside, I appear to be your average young adult, living the typical life. I enjoy being with my friends and family, skiing, reading, working in the community, especially with kids and the elderly and recently, I’ve take up writing. However, I have your not-so-average rare metabolic disorder called VLCAD (Very long-chain acyl-CoA dehydrogenase deficiency). As most commonly described, my body cannot converting certain fats to energy often leading to symptoms of muscle pain, low blood sugar and lethargy. I was diagnosed when I was six month old, so VLCAD has always been part of my life. However, during puberty (around age 12), I started to really feel it impacting my life. Ever since, each day has been a lesson in patience and perspective, trying to master the balancing act of living with a chronic disorder.
I hope that I can share the lessons. the successes and failures, I have learned (most times the hard way) to help others living with a chronic disorder realize we are more than our disorders. We are people, who can lead happy and productive lives. It just sometimes will take a little extra TLC. To the parents out there, I cannot imagine what you must go through on a daily basis, watching your young ones struggle with a very difficult challenge that life has presented them with. I have watched the pain my own parents have endured. At some points in my life, I have thought that it might have been harder on them than it was on me. My greatest respect and support goes out to you all. I hope that this blog and the other resources available ensure you that your children can lead happy and productive lives, especially with your support. I have been able to live with my disorder because of the lessons and tools my parents gave me. I hope to share them with all of you. Also, if you have any suggestions or ideas about what to write about or even just need help with something, please reach out! All my best.