“I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well.” Psalms 139:14
FEARFULLY AND WONDERFULLY MADE
Follow our Family's journey raising a child with a rare disease. Learn about her disease, pray with and for us, and encourage us
MORE ABOUT FEARFULLY AND WONDERFULLY MADE
In May 2019 x-ray showed that our 4-year-old daughter had a place on her left femur that needed further investigation to confirm what it was. After five months of procedures, scans, tests, and specialists she was officially diagnosed with a Gorham-Stout Disease, a rare disease also known as Vanishing Bone Disease. The disease was causing her left femur to deteriorate.
The purpose of this page is to raise awareness of this disease by sharing Alex’s journey with you. We welcome your prayers and encouragement as we walk out this story with our rare warrior!
HOW YOU CAN HELP
People are often asking how they can help along this journey. In this section, I will update as needs arise..
A dear friend set up a meal train for us while we are dealing with this new femur fracture, consultations, second opinions, and difficult treatment decisions. If you would like to help in this way here is the link.
A family member has set up a GoFundMe for our family to help cover expenses surrounding Alex's situation.
There are two t-shirt designs that have been created as fundraisers for Alex's out of pocket expenses. The butterfly was Alex's idea, the verse is what Brent and I claim for her and all of our children, and the designs were created by a dear friend.
1. https://www.bonfire.com/help-cover-alexs-expenses/
2. https://www.bonfire.com/alex-fearfully-and-wonderfully-made/
Below are some of Brent's woodworking items. They are for sale as part of the fundraising efforts to help us cover the costs that are not covered by insurance. Let us know if you have any questions or have a special order you would like to discuss with him.
GET IN TOUCH
