All of us dream and make plans in life. But not all of those dreams come to life. As if I need to explain that to you. Last week, my son asked Daddy, “When you were young, what did you want to be when you grew up?” “Well, when I…
Hey Friends! Monday is here and so is the Bible Reading Challenge check-in! After being so excited to have caught up on the reading, I got a day behind this week. My time was filled with party preparations for the annual Ohio MPS family gathering that my husband and I…
As mama to a special needs girl with a rare metabolic disorder, MPS, the road of special needs parenting was often lonely. Sometimes I wanted to tell God that he chose the wrong mama for Taylor. But he didn’t- his plan for Taylor included me. I’m giving you my best…
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…
On Saturday over 20 families who have children with MPS, a rare metabolic disorder, gathered together for Evento Italiano to celebrate the children and encourage each other at Northwest Chapel in Dublin, OH. Mucopolysaccharidoses (MPS) is a genetic lysosomal storage disease caused by the body’s inability to produce specific enzymes….
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…
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…
What’s In The Bible? is featuring the Carnival of Courage today on their blog. How exciting is that!! Here’s a little glimpse of my writing there and thanks for clicking over to their site to read the rest! What’s in the Bible? Supports Carnival of Courage I’ll never forget two…
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…
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…
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….
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…
