What’s in the Bible? Supports Carnival of Courage

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?.

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7 comments
Chris Slavik
Chris Slavik

We enjoy the Ohio Regional Picnic so much. Rachel and her family are so far above the folks that run into Church and punch the time clock. They live their faith through acts of kindness and caring on a 24/7 basis. Our son is 23 years old. He was diagnosed with Hunter Syndrome back before there was internet and we would all wait for the magazine Courage that only came four times year. We were so alone. Thank you so much Whats in The Bible for your support of our annual celebration of families and friends!

Jenifer Gibson
Jenifer Gibson

We did not make this years gathering but have attended 4 in the past. This is a great time to meet the families of those you talk to and sound off with over email and facebook. Rachel does such a great job each year and the support of her friends and the church is amazing. This is a day you can just be you and everyone in the room understands what it is like to walk in your shoes. Thanks

Elaine Dulaney
Elaine Dulaney

I am the mother of 3 boys. Benjamin (age 6) and Owen (11 months) both have MPS IIIA, and Noah (age 5) is unaffected. We have wonderful family support and support from our church family, but it was truly wonderful to get to meet other families and children like ours. This was our first time at the Ohio gathering and only our second time getting to meet other families affected with MPS. It was great for Noah to meet other unaffected siblings and to be able to see that he isn't alone as well. I just want to say a huge THANK YOU to What's in the Bible? for your support of the Ohio MPS gathering. It was a huge blessing to our family!

Sharon Cochenour
Sharon Cochenour

We felt so isolated with the diagnosis of MPS that Andrew received at the age of 3 yrs old. Rachael and Taylor were the first family we were in contact with. We have been coming to her MPS gatherings for the last 11yrs. And were among the orginal group of 24 family members. We thank you for all the love and support you show our children. God has given us these special children and I thank him everyday that he has given me Andrew.

Melissa Hogan
Melissa Hogan

Thank you so much for your support of this event and also to the Wojnarowski family and friends who have lovingly served other families in this way for so many years. We began attending what we lovingly refer to as the "Ohio picnic" in 2009 several months after our son was diagnosed with MPS. Although this year was the first year we've missed since then, it has been where we've forged so many friendships and has truly been a light in our summer and year. Thank you!

Cheryl
Cheryl

Thank you for supporting our event! Getting together with other MPS families was such a wonderful experience.

Amy White
Amy White

As a fellow MPS mommy to Timmy (age 4 MPS II), carnival goer for 3 years and a friend of Rachel, I want to say THANK YOU for supporting our "little" event. We are blessed.