For lack of a better phrase to emphasize the heaviness and intensity of the beginning: those days were hard.
For those who have walked this path, you’ll resonate with those initial feelings: fear, grief, shock, and overwhelm intertwined with an unexpected NICU stay and diagnosis, tube feeding, low muscle tone, and a list of symptoms on Google that would scare anyone. I won’t lie, I wallowed in much of this pain, as I wasn’t sure where to turn.
I had never heard of Prader-Willi syndrome, and the internet made the condition seem helpless.
As time went on, we were eventually discharged from the NICU. We started seeing physical therapists and feeding therapists, and we saw different specialists. While still feeling overwhelmed, I began to feel less alone. I found other moms with children with PWS online through social media pages. I started to find comfort and community with those who understood. Through these connections and online resources, I was introduced to the world of research for PWS. I was nothing short of inspired, thankful, and truly in awe of the immense research underway. When Vivi was 8 months old, the first medication for hyperphagia became FDA approved. It’s been encouraging to see the needle shifting for more options this early in Vivi’s life.
And I wanted to get involved.
Seeing families host fundraisers and directly contributing to research projects motivated me to have the courage to take the first step. We are blessed with an amazing support system and local community in Michigan. Everyone is always asking questions to learn more and offering support in more ways that we can count. So I thought - how could we utilize our community and support system that so desperately wanted to help?
I knew I couldn’t do this alone.
Cue One Small Step Michigan.
Hosting a local walk to support PWS research that directly impacts Vivian and our family, as well as other PWS families in Michigan, felt like the simplest and most effective way to gather our community together for a great cause. Moreover, FPWR made it manageable for busy families and parents like myself to host a walk. So I was in!
On the day of the walk, my mom was working the registration table and handing out t-shirts. She asked how many would be attending, and I said “probably 30-40 people, max 50,” knowing that was a bit of an optimistic guess. However, once the event started I saw families pile into the park.
I couldn't believe the turnout!
My mom came up to me and said, “you way under estimated - there’s over 100 people that came!” I couldn’t believe it. It was moving to see an abundance of people and families coming to support research and the families affected by PWS.
Between those who attended, the 20+ donated raffle prizes from our family and friends and local businesses, and the donations of those who attended the event - I was speechless. It took my breath away to see the generosity, kindness, and support we received. This moment was a stark reminder of the kind-hearted, good-intentioned people surrounding us in our journey. It was beyond heartwarming, especially given the year we had navigating our new life.
I wish I could have seen a glimpse of that moment when I was sitting in the NICU. I remember staring at my baby, entirely lost and feeling helpless on what was to come. I am SO proud of myself for hosting an event with no experience while putting myself out there to help my daughter in ways I can. This journey has taught me not everything can be controlled; however, that doesn’t mean you can’t make a difference for your child, family, and community in other ways.
My ultimate inspiration? My daughter, Vivian
Vivi is truly a ray of sunshine.She’s the happiest, giddiest, and smiliest little girl you’ll ever meet, all while having endured challenges most will never encounter. She has taught me to never back down and to never give up. She exuberates true love.
It’s difficult to emphasize the drastic shift from the beginning to now. I’ve gone from feeling isolated and helpless to supported, surrounded, and optimistic. We have a full army behind us, not only locally, but with FPWR. What a blessing and an honor to be a part of this journey.
For new parents considering hosting a fundraiser, especially One Small Step, - DO IT! FPWR made this easy and completely doable even with the craziness of appointments and busy life. It was 100% worth it.
Our second annual One Small Step Michigan is set for September 12, 2026. We cannot wait!
