Our sweet zebra girl!

This is Alex. As most of you know she is the 5th of our 6 children and she has a rare Vascular Malformation called Gorham-Stout Disease. There are so many things we have learned as we have become a family with a child who has a rare disease. We are learning to navigate hospitals and specialists offices, learning a medical language we have never before had a need to learn. We have learned to explain our child's disease to her pediatrician, therapists, and other professions who have never heard of Gorham-Stout Disease before.

Another thing we have learned is that the zebra is the symbol used for rare diseases. All my life I have seen zebras at the zoo and in books and movies and marveled at its uniqueness. No two animals look exactly alike but the zebra certainly stands out from all the rest. God designed this animal beautifully and with purpose and yet it is so different from all the others. We are learning to understand this uniqueness in new levels as we understand more and more about Alex and her disease and the others around the world who are also living with Gorham-Stout. Our verse for her is Psalm 139:14 which says, I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well. This verse came to mind as we were looking at Alex's last several months of life. It has been very different than we would have thought or even liked it to be. Hospital stays, surgeries, wheelchairs, walkers, femur fractures, and casts and yet she has been joyful through it all. We realize that she is no mistake, she is not an accident and neither is her disease. This girl is fearfully and wonderfully made for such a time as this. She is a spunky, go-getter, who says she can do anything if she just tries hard enough. Her disease nor her struggle are a surprise to our creator and we are thankful to be able to hang onto this truth.

This photo was taken on Halloween 2019. Christmas 2018 we gave her these pajamas. This was before we knew anything about this disease. When Halloween rolled around she was still bouncing back and forth almost daily on what she wanted to be for trick or treating. The morning of she decided she wanted to wear her pajamas and be a zebra. She didn't know anything about the connection between her disease and the zebra at the time so it was a perfect idea all of her own. She is our unique little Zebra!!

The purpose of this blog is to raise awareness of this very rare disease. To share Alex's story, her strength, courage, and struggle in hopes that it will encourage others. To allow you to walk with our family as we continue to do the things we love to do together and learn to modify or adjust those activities where necessary. Another reason is to ask you to pray for her and our family as we navigate this disease, deal with the ups and downs, make difficult decisions regarding her care, and do life together, as a family, in spite of the challenges. Our goal in our decision making for her is to give her the best quality of life she can have with this disease. To allow her to be a child and experience fun and adventure just like her brothers and sisters. To allow her to try and struggle to do difficult things, and to encourage her to mess up and try again just as we do our other children in their own ways. We are a messy, crazy, chaos-filled family of eight who enjoy the outdoors, spending time together and with friends, and especially camping and hiking. I'm sure I will get to more details about our life but this is a glimpse.

If you are interested in our journey subscribe to the blog and follow our family, pray with us and for us, and encourage Alex and all of us.