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…
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…
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…
“Purplicious Courage”, the annual Ohio MPS (mucopolysaccharidoses) Family Gathering, was held Sat., July 9. 2011, from 12-4pm. 16 families with children affected by MPS and ML disorders came from Indiana, Wisconsin, New York, Tennessee and Ohio to celebrate the children and encourage one another. Northwest Bible Church in Hilliard, OH…
The sea of purple boxes and bags that filled my dining room has diminished significantly since yesterday has passed. But our hearts are full and overflowing because our family had the privilege of hosting the Annual Ohio MPS Family Gathering for the 10th time. Purple has always been Taylor’s favorite…
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…
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…
On Friday, friends and family joined together to celebrate our daughter, Taylor’s, fourteenth birthday! This was a great milestone, as the average life span for Taylor’s disease is ten to fifteen years. We owe a huge thank you to two very special companies! Icing Smiles! A program for terminally ill…
Each September, Taylor’s birthday rolls around on the 21st. So I usually start reflecting on her life a few weeks beforehand. I wrote this poem several years back and today, hopefully it serves as a reminder to you to… live in the moment, every day to its fullest. With complete…
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Saturday, May 15, 2010, Matt Wojnarowski was up to sing the National Anthem for the Columbus Clippers baseball game and the Clippers honored the Wojnarowski family by announcing National MPS Awareness Day! Taylor’s photo was shown on the big screen.I am so proud of Matt and Taylor and want to…
Yesterday Senate Resolution 530 was passed, which calls for May 15th to be National MPS Awareness Day. This coincides with other countries and I am excited to bring light to the first International MPS Awareness Day! If you’ve never read my blog before, then what is MPS? Click here to…
