January 2022
I was diagnosed with LGMD when I was 12 years old. I had difficulty all my life with running, going upstairs, and 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, I worked at a store in the mall, two daycares and cleaned buildings. I went to Douglas College after graduating at 19. I started working at Royal Bank Data Center where I met the man I married.
I got married at 22 and still 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 breathing and walking, so I had to start using a walker when I went outside and eventually began using a bipapA breathing support machine that helps with inhaling and exhaling, often used during sleep. More 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 and eventually my weight dropped down to 75lbs, I couldn’t eat or breathe at the same time and had to stop working. I got divorced at 29 and went back to live with my parents. I had to get tracheotomy and go on a ventilatorA method of assisting or replacing breathing using a machine that moves air in and out of the lungs.... More only 2 months before my 30th birthday in January of 2005.
I was getting off the ventilatorA method of assisting or replacing breathing using a machine that moves air in and out of the lungs.... More for 3 hours a day. I started exercising by walking the stairs, walking outside/inside with my walker, cooking, do personal care on my own, and getting up from laying/sitting position on my own.
I was getting sick with pneumonia and psudomonis every year. I would go to the hospital twice a year and stay for 1 to 2 months at a time. After getting so sick multiple times a year, my muscles started declining, so I could not do all personal care, stairs, get off the ventilatorA method of assisting or replacing breathing using a machine that moves air in and out of the lungs.... More, and get up on my own. I had to use a wheelchair going outside. Therefore, I came to be more dependent on a caregiver.
Last year I asked my family doctor to send me for gene testing because I was doing exercises everyday and still not improving, plus my eyelids were drooping. The results came in as Pompe DiseaseA rare genetic disease in which the body cannot properly break down glycogen, leading to buildup tha... More and DOK7.
I always keep trying, push myself, have a strong faith, and to never give up.
