Today’s guest post is from Rachel Wojnarowski. You can check out more of her writing at rachelwojo.com.
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 diagnosis of MPS. After seeing over twenty-some doctors and relentlessly searching for an answer to her difficulties since birth, at four years of age, the test results were positive for the rare metabolic disorder of MPS, mucopolysaccharidosis.
The second day I’ll never forget was six months later when the doctor’s office called and told us they just diagnosed another patient and would our family like to meet theirs? Would we ever! The ins and outs of dealing with rare disorders, such as MPS, is tough. Eleven years ago, it was even tougher. Social media hardly existed. Facebook and Twitter weren’t options of connection like they are today. We felt…alone.
Until another family came alongside us, their precious daughter affected in the same ways as our Taylor girl. To listen to each other and discuss and chat was more valuable than gold. To be able to pick up the phone and call someone who understood was priceless. To laugh and cry and pray together …spending time making memories and taking pictures of the girls together brought so much JOY.
What if we could give this gift to other families affected by MPS?
So God called our family to give others this opportunity. We began an annual gathering of families who have children affected by MPS, a rare disease for which the average life span is 10-15 years. The goal was to host a one-day event that would be a light of encouragement to those suffering from this rare disorder. To let them know how much we understood as a family affected by the same disease and to be an inspiration of living life to the fullest each and every day, thanking God for them. The first year, we had to mail all the invitations by snail mail. Twenty-four people were in attendance. But the number didn’t matter. Lives were touched and relationships began to form.
This year the “Carnival of Courage,” our 11th season of hosting families whose lives are affected by MPS, brought 21 terminally ill children together, with over 200 family members and event workers to support them. Our little gathering has evolved into a safe haven of love and laughter in the midst of dealing with degenerative disease. While Heaven has gained some of our precious MPS friends along the years of our journey, the footprints of their lives are stamped all over our hearts.
This year we would like to give a special thanks to What’s In The Bible? for their wonderful support of this endeavor. We truly appreciate the messages and fun found in What’s in the Bible? and feel so blessed to be able to share it with the wonderful families who are affected by MPS. There is no source of comfort and encouragement greater than God’s Word and for that reason, we extend many thanks and appreciate the heart and ministry of What’s In The Bible?.
