As Rare Disease Day approaches on February 29, we want to spotlight the extraordinary qualities of our children with Prader-Willi syndrome, celebrating their unique passions and contributions to the world. Our objective is simple: to inspire hope. We know our kids are more than their diagnosis, and we want to prove it. We want to get to know them better—what drives them? What motivates them?
Lucky for us, we didn’t have to dig deep to find great hope. In today's HopeFull Highlights, three mothers proudly share the remarkable qualities of their children, celebrating their strengths and the positive impact they bring to their lives. As we celebrate their resilience, we'll also explore why these families are committed to eliminating the challenges of PWS through research.
Meet Aaron, 11
Written by Amanda Dunn, Aaron's mom
Aaron loves music and dancing. His brother gave him the nickname DJ 3 Seconds since he never stays on one song for too long. He also loves shooting baskets, riding roller coasters, and working out.
What do you love about being Aaron's mom?
I love being Aaron’s mom. It’s such a privilege. I love watching him enter a room full of strangers and make instant connections. He sees people in a way that others don’t, and he spreads joy to everyone in his path. I love seeing his excitement when he achieves something new. I love his sense of humor; he keeps us all laughing. I love his hugs. I love that he challenges me to always believe in what’s possible and to never give up because he never does.
Tell us about HopeFULL
HopeFULL is basically a party—with food, an open bar, raffles, surprises, and fun—all for a very good cause. We found a wonderful space in West Chester, OH, that is giving it to us for FREE. It’s so generous, and it means that all dollars raised will directly go to advancing research targeting some of the most challenging symptoms of this disorder. Aaron wants to live life full(y), and we are committed to doing all that we can to make that happen.
Join the Dunns March 3, 2024 for HopeFULL in southwestern, OH!
Meet Olivia, 11 months
Written by Katie Yu, Olivia's mom
We are so excited that after lots of hard work, Olivia has started rolling on her stomach and back! She's also started really paying attention to our dog, Basil, reaching out to pet him and giggling when he gives her kisses.
What do you love about being Olivia's mom?
I'm amazed at how much Olivia teaches us every day. She helps us embrace the present moment and enjoy every small victory. She's curious; her smile and laugh make us so happy, and we're already beginning to see a bit of a feisty side!
How has it felt to plug in to the PWS community?
We had the chance to attend the FPWR conference in Denver last October and felt so grateful to join a community of parents and researchers who have invested so much to bring PWS research to where it is today. Harvesting Hope seemed like a great first step for our whole family to get involved in further funding research, and we have been completely blown away by all the support we've received from family and friends.
Meet Charlotte, 13
Written Anissa Bradley, Charlotte's mom
Pictured to the right is Charlotte and Jack at One Small Step Avon 2023
Charlotte is the head barista at her school’s coffee cafe and has been a member of the archery team for two years. She loves therapeutic horseback riding and started when she was 2.5. Her favorite vet shows are “Dr. Oakley, Yukon Vet,” “Heartland Docs,” and “Dr. Jeff, Rocky Mountain Vet.” She even got to meet Dr. Jeff on a trip to Colorado last year. She loves playing preschool with her Reborn dolls. She is very passionate about coffee and her three cats.
What do you love about being Charlotte's mom?
I love how Charlotte is kind. She will go out of her way to smile and say hello to people wherever she goes. It has been amazing to see how she has grown to be an important part of her school community. That’s her favorite place to be. We are proud of how hard she works academically. She never gives up. She tells us, “I am a regular kid. I just have PWS."
Why FPWR?
Our family supports FPWR because we want Charlotte to live independently. FPWR has been at the forefront in PWS research, and we believe research is the way forward.
Staying HopeFull
As we advocate for those affected by rare disease, let us hold onto the belief that together, we can make a difference. Together, we inspire hope, amplify voices, and strive for a future where every individual, regardless of their diagnosis, is recognized for the extraordinary qualities that make them uniquely beautiful.
Celebrate rare with us! Submit your Story of Hope, subscribe to the Hopefull newsletter, or learn how you can get involved in our mission of eliminating the challenges of PWS today!
