Brenna Westlake was born in December with with a rare skin condition called Harlequin Ichthyosis. Brenna’s skin lacks a certain protein which helps it form correctly, and instead it was formed as thick, white scales with ridges all over. Since her birth, Brenna has proved to be a fighter and won the hearts of my entire community.
Brenna’s mom, Courtney, has kept an almost daily blog since December, which you can find here. In honor of Rare Disease Day on February 29th, Courtney shared a special project she’s been involved with and asked for help as the project moves into the final stage. She wrote:
When Brenna was a couple of weeks old, a friend shared on twitter about an organization called MarbleRoad, which raises awareness about rare diseases, and a “contest” they were doing called the Rare Children’s Storybook Project. The focus of the project was to compose a story involving a rare disease…and then chosen finalists would be asked to create an accompanying video.
At first, I didn’t think I had time to devote to writing a story in a matter of days. But one afternoon, I spent a few hours alone with Brenna at the hospital, and when I came home, the story just poured out of me. I wanted to write something for her and to her, so that she would know how we felt about her birth and her presence in our lives.
The winner for this project (who receives some money for medical costs and is considered for publication) is chosen based on the number of views, comments and “likes” on the video, so I would really appreciate you all taking the time to watch my video and read my story about our sweet girl!
Please take a few minutes to watch this touching video and help Brenna and her family win by liking the video here.
