Today is Rare Disease Day. As many of you know, my daughter, Taylor, has a rare genetic metabolic disorder, MPS. Her subtype is known as Sanfilippo Syndrome. Her disease is neurologically degenerative and the average lifespan for her type of MPS is 10-15 years. Taylor is 17 and God has graciously blessed us all with her health. While we have our ups and downs, each day we live is by faith, … [Read more...] about Rare Disease Day
International MPS Awareness Day is a special day close to the heart of the Wojo tribe. There are some days in life you never forget and one of them for me was the first night I read the word mucopolysaccharidoses (MPS). A pit formed in my stomach and tears flowed down my face as I recognized and matched all Taylor's symptoms together in one explanation after searching for several years and … [Read more...] about International MPS Awareness Day May 15
Sometimes you have to stop what you are doing and remember why you’re doing it. This is one of those moments. This Saturday, about 20 families will join together for a day of fun and sharing. All have a common bond: a child with a terminal illness, MPS (mucopolysaccharidoses). So why do we plan and prepare for this great party every year? To give others a glimpse of the joy we found … [Read more...] about Saturday is Party Day!
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 … [Read more...] about What is MPS?