Months and weeks of planning and preparation all led towards one day, July 14, 2012. The day 21 families who have children with the rare disease of MPS met together to celebrate life and enjoy one another. The Carnival of Courage is designed to give MPS children and their families a wonderful day of encouragement and love. We understand the toll the disease takes on the child...and the … [Read more...] about Carnival of Courage Brings Fun & Joy
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!
Morning! I almost forgot to let you know that I'm up to bat at The Better Mom today! Here's a little starter for you; hope you'll pop over there and visit. As soon as my feet hit the pavement, the conversation with God flowed more quickly than my running stride. “Lord, it’s my first post writing for The Better Mom. And while I know You provided the opportunity, I’m feeling responsible. I … [Read more...] about Truly Becoming Better
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?
It's a rare day! Rare Disease Day, that is. What is Rare Disease Day? More than 600 patient organizations, government agencies, educational institutions, clinical centers, and companies have signed on as Rare Disease Day Partners in the U.S., which means they support the global theme and goals of Rare Disease Day. My Taylor has one of those rare diseases, mucopolysaccharidoses (MPS.) … [Read more...] about Rare Disease Day is HERE!
Contributing at RooMag.com today! Woohoo! So here's your teaser; sure hope you'll stop by there and continue reading. For many mothers, a dream ignites at the first moment of acknowledgment that a tiny little human being is growing inside the womb. After nine months of nurturing, the dream of holding a precious baby in your arms, healthy, happy, and secure, is about to come true! The … [Read more...] about A Parenting Dream
Top Post June 2011: Our Turn is Coming.... 06.08.11: Last week, Taylor, my daughter who has MPSIIIB, caught a cold. Not a problem. At least it seemed that way. Then over the next couple days, she was not herself. Made it through the last day of school and then a little extra sleep. Saturday, she seemed to be a bit better. Then Sunday, she awoke with a terrible cough and was extremely … [Read more...] about The Most Important Thing to Remember this Year
A significant day. Not just "another" birthday. Number 15. When Taylor was given a diagnosis of MPSIIIB (mucopolysaccharidosis), with that diagnosis came a number to beat. The average life span is 10-15 years. Wikipedia labels it: Death by the second decade. So what do you do when your daughter has been given this label? Pray. Weep. Mourn. Grieve. and the conclusion we've come … [Read more...] about Life Cannot Be Labeled