A special contribution by guest blogger Laura Achlabach
From the very beginning, Anthony has exceeded every expectation set for him. “He stopped using his g-tube before he was even four months old,” his mom shared proudly. “Now, he’s eating solids just like any other little guy.”
Caring for a child with Prader-Willi syndrome can often feel like facing the impossible, but Anthony’s mom has found strength she didn’t know she had. “When Anthony’s MIC-KEY button needed changed, I took out the old one and put in the new one like a boss!” she said. “If I sit down and write out all the logistics of caring for my little guy, it looks impossible — but somehow, I get it done. It makes me feel confident that I can take on almost anything.”
That confidence is fueled by community. “Other PWS parents are your tribe — they get it,” she explained. “They know what you’re going through and want to help.”
For new parents just starting their journey, her message is simple: “Love them — they are beautiful, precious gifts. We’re the lucky ones who get to love them.”
Hope, for Anthony’s family, comes from both science and solidarity. “The research being done to help make life better for our kids gives me so much hope,” she said. “Knowing we have a team — that we’re not in this alone — makes all the difference.”
Through it all, gratitude remains at the heart of their journey. “I’m thankful for the love and support of all the people who help us care for Anthony,” she shared.
Raising Anthony has brought countless lessons. “I’ve learned to inhabit the present moment, to build life around experiences — not food traditions,” his mom reflected. “Anthony’s PWS is a diagnosis, not a definition of who he is. The challenges we face are opportunities to be better people.”
When reflecting on what it means to parent a child with special needs, she said, “It’s true — until you have a kid with special needs, you have no idea of the depth of your strength, tenacity, and resourcefulness. Having a kiddo with PWS has made me master new skills in nursing, therapy, and advocacy — and even become a more creative cook.”
Most of all, she wants others to see what she sees every day: endless possibility. “Don’t underestimate your kiddo,” she said with a smile. “Anthony amazes me every day.”
