MPS I is a mucopolysaccharide disease also called Hurler, Hurler-Scheie and Scheie syndrome. Hurler takes its name from Gertrude Hurler, the doctor who described a boy and girl with the condition in 1919. In 1962, Dr. Scheie, a consultant ophthalmologist, wrote about patients who were more mildly affected. Individuals who do not fit the severe or mild ends of the disease were said to have Hurler/Scheie. The specific disease names have been replaced with the designations attenuated (diminished severity) and severe MPS I. MPS I has a wide range of symptoms that vary in severity and can be managed and treated with enzyme replacement therapies. There is no cure for MPS I.
Our daughter, Kaitlynn began her battle with Hurler Syndrome (MPS 1 - Severe) at birth but was not diagnosed until November 1993 at the age of two. She was our sunshine and when she left this world at the tender age of 13, our light diminished. Seventeen years have passed and although we have learned to continue our lives, we look forward to the day when we see her again.
This post is not only about raising awareness but to ask for donations in memory of Kaitlynn Wellman and all the other children who are still battling this disorder.
Donations can be made directly to the National MPS Society's website by clicking the "Donate Now" button in the upper left hand corner of their website. Any amount is appreciated and will help to further family outreach and research. Children just like our sweet Kaitlynn need a cure for this dreadful disease.
If you cannot donate today, we appreciate your time in browsing the National MPS Society website to learn about MPS and related disorders.
The Wellman Family
In memory of Kaitlynn Marie Wellman
Entered this world on April 3, 1991 and while in the arms of her parents flew home August 9, 2004.