I was diagnosed with LGMD when I was 12 years old. Had difficulty all my life with running, going upstairs doing sports, but no matter how hard things were I always pushed myself. I started working at 12 years old, started babysitting. At 16 years old worked at a store in the mall, two daycares and cleaned bulidings. I went to Douglas College after graduating at 19. Started working at Royal Bank Data Center, that's where I met the man I married.
I got married at 22, was able to do everything for myself without any aids or help. I worked at Vancouver Career College as a receptionist and bought my first home. At 25 years old, I was having a hard time to breathe and walk. So I needed to use a walker when I went outside and needed to use a bipap machine at night. At 27 years old I was having more trouble being able to breathe and walk. I was getting a lot of aspiration pneumonia, got down to 75lbs, I couldn't eat or breathe at the same time and had to stop working. I got divorced at 29, went back to live with my parents and had to get trached/vented 2 months before my 30th birthday on January 2005.
I was getting off the ventilator 3 hours a day, doing stairs, walking outside/inside with the walker, cooking, personal care on my own, getting up from laying/sitting position on my own.
I was getting sick with pneumonia and psudomonis every year, would go to the hospital twice a year and stay for 1 to 2 months everytime. After getting so sick, so many times, my muscles started declining, so I couldn't do all personal care, stairs, get off the ventilator and get up on my own, had to use a wheelchair going outside so needed to be more dependent on a caregiver.
Last year I asked my family doctor to send me for gene testing cuz I was doing exercises everyday and I was getting results, plus my eyelids were drooping. The results came in as Pompe's Disease and DOK7.
I always keep trying, push myself, have a strong faith and never give up.
