02/29/2024
When you're pregnant, you get lots of questions. One of which is: Are you hoping for a boy or girl? How many of us have answered "all I pray for is a healthy baby". Not too much to ask normally, right?
Well, for a select few, it is too much to ask. Imagine holding your 6 month old son and learning that he has a rare general disorder that you've never heard of before! All of a sudden, you learn of all the struggles ahead, all the symptoms and hearing "there is no cure" with the life expectancy of only 5 to 10 years... all while the room is spinning... Followed by months of doctor visits, hospital stays, surgeries, therapies and, for us, HOPE for a chance at survival past the age of 10 with an Unrelated Cord Blood Transplant.
That was my life. It started on August 1, 2002 and lasted until March 10, 2003.. When my 13 month old little boy was placed in my arms to take his last breath. HURLER syndrome claimed the life of my son. It is a rare disease that falls into the MPS family. Never heard of it? Not surprising.
Today is not only Leap Year Day but also Rare Disease Day. I urge you to make yourself aware of MPS today in memory of my "REESIE CUP". Awareness increases the chance to bring a cure to the 100's of children suffering from this disorder.
www.mpssociety.org
Thanks!! Now go hug your healthy kids a little tighter today!!!
Our mission serves individuals, families, and friends affected by MPS. We support research, provide families with invaluable resources, and work to increase public and professional awareness.
