A special contribution by guest blogger Laura Capone
When Tommy was born, his parents were given a long list of things he might never do. The outlook for his future felt uncertain, filled with low expectations and what-ifs. But years later, Tommy has rewritten that story entirely.
“We were given a very low expectation for Tommy's future,” his mom shared. “But he is a walking, talking, hilarious, and smart boy.”
Tommy’s progress continues to surprise and inspire his family every day. Behind that progress is a strong network of support—both close to home and across the PWS community. “Family and friends have been incredible,” she said. “But we would have been lost without the online PWS community and are so lucky to have developed some really close relationships.”
For families just beginning their PWS journey, Tommy’s mom offers words of encouragement rooted in lived experience. “I would say congratulations! You were just given a child that will surprise you and change you in the best way possible. The amount of pride and love you will feel as they accomplish their goals will fill your heart.”
Hope is a constant theme in Tommy’s story. “I am thankful for hope,” she said. “I know my child's future is not written in an outdated textbook, and he will do great things.” Much of that hope comes from the growing momentum in research and the tireless efforts of the PWS community. “Research and Dr. Miller give me hope for the future,” she added. “The passion in this community and the will to change lives is so powerful.”
Like many parents, Tommy’s mom has learned just how much strength advocacy requires. “When your child has special needs, you are their advocate,” she explained. “You have to fight for everything—from medicine and insurance to therapy and school accommodations. It’s not easy, but you do what you have to do to get your child what they need to be successful.”
Reflecting on the journey, she often thinks about how perspective has shaped their family’s outlook. “I’m thankful I was given hope early on so I could see what could be, and not get stuck seeing the grim picture that was painted for me in the NICU,” she said.
For Tommy’s family, that hope continues to grow stronger every day. “Never give up, and keep pushing even if you think something seems impossible,” she shared. “Because sometimes, the impossible just needs a little more time.”
