I am currently jotting down notes for a novel I am writing about MPS. I have two very close friends Jennifer and Savannah who have been suffering through this disease their whole life. I’ve known both of them for about twenty or so years, possibly longer. If you’d like to learn more about what this disease is please go to http://mpssociety.org/
I’ve been a spectator of this disease my whole life. I still am learning more about it every day. I remember when I was in first grade, I had met Jennifer. We didn’t talk much at first, but we did know of each other. At P.E. or any events that had to deal with presentations, most kids would sit on the floor. The only one who didn’t was Jennifer, and I didn’t know why until I asked someone. It was not out of jealousy or anger. It just made me curious. The person told me that her bones were very weak from a disease she had.
In seventh grade, we became very vocal with each other. It was when I dumped a girl that I was dating at the time that Jennifer called me an asshole. We both still laugh about that today. She even called me a shit head in front of my sister in the cafeteria at the high school, and of course, my lovely sister agreed with her. I guess I can openly admit that I was a pretty selfish jerk then. Anyways, I remember one night Jennifer texted me saying that she could die before she’s sixteen due to her disease. I was devastated by what she said. We talked for a long time that night.
It was a blessing for everyone to find out that Savannah and Jennifer were nominated for the test trials for a new treatment that would help replace the enzymes they need. They’ve endured long hours in hospitals every week. They currently have a nurse that administers it at their house now. I sat in on one treatment just to see what they had to do. Both of them had IVs in their arms and they waited for hours until all the medication went into their bodies. We had lunch together and watched a movie that was about the creators of the medication that has saved many children’s lives. It’s called “Extraordinary Measures”.
Both of these girls, their mom and dad, as well as, multiple families out there have seen the danger, the scares, and the stress of this disease. I know for them waking up without pain is a blessing but that does not happen very often because of this disease. Also, finding out a friend or someone they met has died because of MPS builds tension on their hope to survive. Please, help find a cure for MPS. Educate yourself, donate, create awareness! These kids, teenagers, and young adults fight everyday to not feel pain anymore. Help them rise above MPS and kick its ass once and for all!
Happy 26th Birthday, Jennifer! 🙂