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 was really little, around 5…
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…
As mama to a special needs girl with a rare metabolic disorder, MPS, the road of special needs parenting can be a lonely one. Sometimes I want to tell God that he chose the wrong mama for Taylor. But he didn’t- his plan for Taylor included me- so I’m giving you the best advice I…
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…
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. My daughter, Taylor, is affected…
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…