With Mother’s Day around the corner, we thought it might be nice to take this time to wish all of the moms in the EB Resource community a very special day and celebrate the great work that EB moms are doing to help spread the word about the disease, as well as share with others the need for research support. Every time a mom of a child with EB raises her voice, whether she too was diagnosed with the disease or not, she has the potential to seriously impact the lives of these patients, young and old, and their families.
We want to mention and thank the following trio of moms for all that they do to help make a difference. And what do all of these women have in common? Each is sharing her personal story in her own words through blogs that can serve as powerful tools to reach out to the community to educate others about EB, support other families facing similar challenges, and get people talking. That’s why they join our growing list of EB Champions.
- Courtney Roth. A former nurse, Courtney Roth is mom to nearly two-year old Tripp and became a full-time stay-at-home mom following the birth of her son. She frequently writes on her her blog “EB”ing a Mommy about what day-to-day life is like for little Tripp and how the Louisiana family copes with the challenges that arise, often relying on strong faith. Her blog is refreshingly honest and was recently noted in an article about the family in a local magazine, Tangi Lifestyles (April /May 2011). In her blog, Roth also responds to questions submitted by visitors about EB.
- Sara Denslaw. At her personal blog “Four Busy Bees and Two Little Butterflies,” Sara Denslaw updates readers about the status of baby Joey, now about 8 weeks old and like both his mother and two of his siblings who have since passed away, he has been diagnosed with EB. The busy Florida mom and web designer also leads an online support group and blog EB Florida and contributes to another site “In Garrett’s Memory,” with blogs about various EB-related topics, fundraiser news, clinical research trials, and wound supply information.
- Patrice Williams. Like Roth, Patrice Williams is a regular blogger at her personal blog “Before the Morning,” sharing her family’s personal story of tragedy and triumph to inspire others. In the entry titled “Our Story,” she humorously lays out the story behind how she and her husband Matt met, writes candidly about the devastating loss of their first baby, Gabriel during pregnancy and discusses the impact of her faith in carrying the couple through not only that loss, but throughout the unexpected arrival of second baby Jonah, now two, and news of the baby’s diagnosis of Junctional EB. She’s since launched a Prayer Group on Facebook for her son and is often sharing with readers news and updates from other EB families. Earlier this year, the N.C. couple also coordinated Jonah’s EB Auction, an online auction event with all funds raised to be donated to DeBRA of America.