I never knew what MPS stood for until March 2001. But neither did the twenty-some odd doctors I took my daughter to visit in the preceding months and years.
May 15th is International MPS Awareness Day. One purpose of this day is simply to make people aware of the disease, mucopolysacchridosis (MPS), so that diagnoses and treatments can be issued at the earliest stages. Currently there is no cure or treatment for my daughter’s particular subtype, MPSIIIB. But other types of MPS have treatment options which offer better quality of life and longer life span than without treatment. Early diagnosis is critical for intervention.
A second purpose is simply to celebrate the lives of those suffering from MPS. To honor them for their courage in fighting a disease that is relatively unknown and hardly understood. To recognize their parents for the gift of care they give each day of their child’s life.
My friends, Matt & Shannon McNeil, have two precious children with MPS. Matt has written a chapter book “The Strange Tale of Ben Beesley,” which I was privileged to read. Such a beautiful story, but I don’t want to give anything away- you will love it! Ok, I’ll hush and you watch the video.
To My Taylor Girl: You are God’s gift. Your bravery is exceeded by none and we delight in your smile. One day you will be whole; oh how I look forward to hearing your voice once more and seeing those strong legs jump with joy. I love you and am so very blessed to be your mama.