Charity Smith works for more community awareness for MPS
May 15 of every year is MPS awareness day and, for the third year, the City of Allegan will light up the Second Street bridge with purple to raise awareness for mucopolysaccharide.
MPS is a group of genetic diseases, where those effected cannot break down waste materials stored in cells, due to their body not being able to produce the enzymes necessary. There are seven different forms of MPS. At this time there are no cures for any of the diseases.
Charity Smith of Allegan has seen this disease firsthand. Her daughter, Aleyah, was diagnosed with one of the seven diseases at 11 months. Aleyah has Hurler Syndrome, a terminal disease; those who go untreated typically have a life span of just 10 years.
She was not immediately diagnosed; at the time, MPS was not something that was checked in newborn screenings, it was not until Smith brought in Aleyah for a checkup for a bump on her back that a doctor found the disease.
“If it wasn't for this specialist knowing of MPS and how it affects kids we may have never known or caught it in time,” Smith said.
Aleyah was then admitted to Helen Devos Children’s Hospital, in Grand Rapids, where she was put through extensive chemotherapy to prepare her for a cord blood transplant.
“This was not a cure for her, but we knew it was the best choice to help her survive in hopes we find a cure one day,” Smith said.
Aleyah is now 8 and Smith has begun fighting for more awareness for MPS. Recently MPS was added to the screening process for newborns, something that will help diagnose the disease early, giving doctors the chance to save lives before it is too late.
Aleyah’s doctor, Dr. Ulrich Duffner, of Grand Rapids, spearheaded the effort to get MPS added to the screenings. Smith wrote this on Aleyah’s Facebook page, Aleyah Strong, “Now many babies and families will get the treatments faster with being diagnosed earlier. Which in return can help halt the damage this disease can cause within a short amount of time.”
Smith will spend this year’s awareness day handing out purple snacks and bracelets to Aleyah’s class, as well as encouraging others to spread the word on social media by using #MPSAwarenessDay2018.
Other families, throughout the United States have started putting on large events, such as golf fundraisers, bowling, walks and other events, in an attempt to both raise awareness and money for research. That’s something Smith says she sees in her future.
To donate to help find a cure for MPS, go to mpssociety.org. Stay up to date on Aleyah’s journey by following her Facebook page, Aleyah Strong.
Contact Nicklas Grifhorst at (269) 673-5534.