Decker's Story
Jan 25, 2016
By: Renee
I'm a 15 year old female, suffering from a genetic lysosomal storage disease caused by my body's inability to produce a spicific enzyme. The enzyme I do not produce is called galactosamine-6-sulfatase, once a week I get an enzyme replacement therapy/infusion to help slow the progression of this disease. This disease can cause damage to the heart, bones, joints, respiratory system, and at the central nervous system. Also, along with all of these things, I suffer from extreme chronic pain and very damaged eye sight. I was diagnosed with Morquio A in January of 2015, just 2 months after my 14 birthday.
Hi My Name is Zuleyka im 9 years old and I have Morquio syndrome type A as well and I'm in third grade how are you doing?
I'm good, how are you?
Hello, ma name is alexanne and I am 15, i'm from québec. For my english class, I have to follow someone living with the morquio syndrome. I am really interested about learning more 'bout what you're living through and you seemed nice! I was really sad when I learned that there's no known-cure for it as i'm fully in medical' word (i want to become a doctor, but anyway it's not in the subject and i don't even think that this information is in its place in this sentence, i'm not completely bilingual ahha). I hope that you will accept to talk with me to let me know how really nice you are ;) and what you're living through! However, let me hear about you soon! You can join me to [email protected] or by facebook, Alexanne Robert-St-Denis, or even here, i'll look often! ;) xx thanks for all.
