Welcome to Allison's Web Page. It has been provided to keep people updated about our Child. Allison has a Genetic Disorder called Mucopolysaccharidosis(MPS)1. For her treatment, we chose an Enzyme Replacement Therapy (ERT) called Aldurazyme. Allison gets a synthetic version of the enzyme she is missing by I.V. Her infusions last about 4 hours and are done weekly. Sundays are her usual infusion days! She will have these infusions every week for life or until there is a better treatment.
Journal
Tuesday, May 12, 2009 9:33 PM CDT
May 15th, 2009 National MPS/ML Awareness Day!!!
It is time to get out your purple ribbons! May 15th is National MPS/ML Awareness Day and we are celebrating! We have Purple shirts, Purple wristbands, purple suckers and purple ribbons!
My daughter, Allison Restemayer, is in second grade this year at Robert Miller Elementary. Allison was diagnosed with a rare genetic disorder, Mucopolysaccharidosis or MPS type 1, just before her second birthday.
MPS disorders are genetic disorders that limit the body's ability to produce certain enzymes needed for metabolizing complex sugar molecules. These diseases are progressive and cause cellular damage which severely diminishes quality of life and dramatically shortens the lifespan of those affected.
I will be bringing purple ribbons to the office at Robert Miller for those of you who would like to join us in celebrating National MPS Awareness Day. Please wear purple and/or your purple ribbon proudly in honor of the COURAGE children with MPS disorders, like Allison, show. If anyone else would like a purple ribbon (in the Bismarck area) please send me an email and I will try to get one to you!
Ashley and Allison are teaching us what it is to raise awareness, they have a video that has been uploaded to You Tube, check it out! Raising Awareness: “In Their Words” http://www.youtube.com/watch?v=jTdfZA1LRyo
Those of you who work within Bismarck Public Schools will have to use the username and password that is sent to you in an email each week to watch this video from a school computer!
For more information on MPS disorders, Please visit: www.mpssociety.org
To visit Allison's website, go to: www.caringbridge.org/nd/allison Please sign the guestbook and let Allison know that you took the time to visit, she loves to get new messages!
One last request: Please forward this email on... to everyone and anyone. There are more children out there with a similar diagnosis, and unfortunately there are more to come. One of our family's biggest challenges has been having to explain over and over again what MPS is and what it does. If we can make people aware of rare disorders like MPS, it will make a difference.
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