Rare Disease Day

Rare Disease Day

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…

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The Magic Number

Today is a very special day- the magic number has arrived. My Taylor girl turns sweet 16 today;16 is significant for many reasons.  Most would think of a driver’s license…dating…  But for our family, Taylor turning 16 is HUGE simply because- we were never sure that Taylor would turn 16….

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Saturday is Party Day!

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…