Stories of our MPS families
The texts, mostly written by parents, are mainly reports about living with MPS-children, about the time after receiving the diagnosis and about the daily life. These stories will help you understand what the families are going through and what it means living with MPS children.
Monday morning ten to six, the alarm clock goes off. “I hate Mondays” and “Only five minutes left” I think to myself. Using the best guerrilla tactics, I ambush me quickly to hit the snooze button on my alarm clock. Then I wrote an article for the newsletter for the German MPS Society on how I can balance my free time with work and school. The article was so well received that Michi would like to bring the text to you in the MPS folder. Here you go…
When Sophie first had a sleep examination outside of the hospital on the occasion of the study for Vimizim in Mainz, the measurement showed how good or bad her nightly oxygen saturation was. She had regular examinations like this before, but they never gave such bad results. The measurements were repeated in Zurich and at the same time night ventilation was adjusted on the IMC (monitoring station).
In 2006, at the age of four, I was diagnosed. Three months later, I started enzyme replacement therapy in the hospital. Jean Mercer gave my first infusion in Manchester. Eleven years later, I am now on home therapy and I haven’t missed more than three infusions in a year. That means I’ve had 588 infusions and a lot of needle pricks. He taught and filled my whole life with his innocence, was born. I watched him all the time, and while he slept, I checked that everything was okay. From month to month he got bigger and developed. I felt like the richest person in the world. My son learned to speak, walk, and play.
My son Faruk, who taught me real love and filled my whole life with his innocence, was born. I watched him all the time, and while he slept, I checked that everything was okay. From month to month he got bigger and developed. I felt like the richest person in the world. My son learned to speak, walk, and play.
Hello, my name is Chris. I am 33 years old and have MPS type I, Hurler’s disease. I was only diagnosed with MPS about three years ago.
A diagnosis at the age of 30 is a bit unusual. For the fact that I already had bad hips in infancy, couldn’t make a closed fist and always got sick quickly, the diagnosis came quite late.
In 2011 I got my first Vimizim infusion in Mainz. It was a difficult year for me and my family. My dad used up all his vacation time in order to fly to Mainz with me every Friday. He worked very hard. My mom had to stay at home with my four younger siblings. It was...
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