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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God Is Bigger

Update: 11/2/12 9:00 pm: Through the wonderful outreach of Samaritan’s Purse (along with a few tweets, facebook messages, and phone calls), the Begs are sleeping warmly in their own home tonight!! GO God!!! AND through one of the incredible blog readers of this blog, by tomorrow 30 gallons of gas…

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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…