Our Little Miss Hannah Foundation hosted our first annual Vegas Cares About Rare Kids 5K on February 25, 2017. It was an amazing success not only by the turnout of over 500 people in attendance, but by the opportunity to introduce our community to 21 rare kids in our area. Our Little Miss Hannah kids were the event’s VIPs and were showered with love and attention from everyone.
Three children that were scheduled to attend didn’t make it, which wasn’t a surprise, as those of us know in the childhood rare disease community that medical complications happen without notice. It is just a fact of the ‘rare life.’
What I didn’t expect was to hear that one of our VIP kids passed away on the day of our race.
When I heard from the mom with the news, it felt like a punch in the gut. I was heartbroken for the family and admittedly, it was like reliving the feeling when Hannah passed away. I asked the mom if we could do a tribute to him, and she sent me this within just a few hours of my request.
Our foundation was created to provide hope and enhance the quality of life for our local rare and medically complex kids. I know firsthand that life isn’t always “fair,” but my husband and I want to do whatever we can to help lessen the suffering of other rare parents who are walking in the shoes we once filled.
When Hannah passed away, my husband and I didn’t dive into Gaucher Disease type 2/3 research to find “a cure” like everyone expected, we wanted to dedicate our organization to helping those families with children today that may not benefit from research being done in whatever rare disease community they belong. We know how vital research is to the future children diagnosed with these disorders, but we also know it is just as vital to take care of those kids that are currently diagnosed today.
This isn’t the first Little Miss Hannah child who has passed away since we started our organization in 2012. Although it digs a deeper hole in my heart each time we lose one, I just hope that Hannah’s legacy makes a lasting difference in the lives of the surviving children and families we feel so humbled to be able to work with.
