I’ve been looking back through old pics this week and stumbled upon this one of Elsa and me. I can’t believe we got to bring this teeny angel home with us! She was just a few days old here…
This was taken a few days before we got Elsa’s diagnosis of Wolf-Hirschhorn Syndrome - an overwhelming bit of information, to say the least. Within a week of the receiving the news, my family started telling me that I needed to check out this great website, which was full of inspiring stories and amazing kids.
In visiting wolfhirschhorn.org, I knew I’d be diving headfirst into the day-to-day lives of other children with WHS. At first, I wasn’t sure I could handle looking down the road… seeing what her life, our lives, might be like in 1 year, 5 years, 10 years.
But after a few weeks, I worked up the courage and went to the site. And it changed my life. Instead of feeling alone on our path, I connected with dozens of other families on the exact same journey. The feeding troubles, the seizures, the heart defects, the developmental delays, the fears, the victories.
It wasn’t long before I started posting about Elsa’s journey on the site, alongside other parents. This probably comes as no surprise to you! Sharing definitely helps me process our journey and allows me to draw others near where we are. Here’s an early post…
When Elsa was age 2, I became more involved in the website, and today, I work alongside a few others to keep the site in motion and run exciting events to support our families.
Once a year, we do a fundraiser that allows us to continue giving away cool prizes to kids with WHS. Recent giveaways have included a supportive outdoor tree swing and an indoor play set, and just last month, we gave away three Amazon Fire HD kids tablets. The tablets went to Washington state, Alaska and Canada! Sending out those special packages was a highlight of my holiday season. Here’s a vid of Elsa and I announcing the winners…
Today, Jan. 11, we launched our latest fundraiser: The Superhero Story Book, which features 36 superheroes with WHS. All photo books ordered by Jan. 25 will arrive before Valentine’s Day… fitting because our kiddos’ superpower is their amazing LOVE! My collaborator Janet pulled the fabulous book together, and I’m helping get it into the hands of our families and their friends. It’s a soft-cover book that sells for $25 (shipping is included in the cost). Here’s an inside spread… (Do you spy Elsa?)
If you’d be interested in having a Superhero Photo Book, or supporting the website’s giving initiatives, you’ll find all the info HERE. Thank you for continuing to follow along and share your words of support and encouragement. We have never felt alone on this journey, which is truly remarkable and one of our lives’ great blessings.