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 host each year and I had a hard time adjusting and balancing my time throughout the whole week. This is the 12th … [Read more...] about Bible Reading Challenge Check-In
Hey Friends! It's the typical hopping summer week for the Wojo tribe. HUGE Birthday shout-out to my husband, Matt, on his 50th birthday yesterday!! We are celebrating with a big backyard party tomorrow, so you can imagine the hustle and bustle at our house today. It's also the last day of school for the middle 4 kiddos AND our family was featured in the Columbus Dispatch newspaper today! Here's a … [Read more...] about Fascinating Article and Video Share from Columbus Dispatch
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 graciously blessed us all with her health. While we have our ups and downs, each day we live is by faith, … [Read more...] about Rare Disease Day
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 down my face as I recognized and matched all Taylor's symptoms together in one explanation after searching for several years and … [Read more...] about International MPS Awareness Day May 15
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. Since we received Taylor's diagnosis of MPS when she was 4 years old, a medical number has been assigned … [Read more...] about The Magic Number
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 specific days in the life of my daughter's journey with her disease. The first was the day we received Taylor's … [Read more...] about Tremendous Support from What’s In the Bible?
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!