The story of Huntley
Huntley’s journey began long before we held him in our arms. At just 20 weeks into the pregnancy, we learned that something wasn’t quite right. Huntley was measuring about two weeks behind his gestational age. From that point on, we found ourselves in and out of appointments, with specialists constantly monitoring his growth. It was a roller coaster of uncertainty, and all we could do was wait and hope for the best.
When he was born, full-term but weighing only 3 pounds 11 ounces and measuring just over 15 inches, our world changed. The NICU team were true heroes, guiding us through the process and offering us invaluable support. They not only helped us care for our tiny son but also played a crucial role in steering us toward the right diagnosis. We spent a month in the hospital before we could bring our firstborn son home, and it felt like the moment we had waited for was also the beginning of a much bigger journey.
That first year was a blur of doctor visits and unanswered questions. We knew something was different, but we couldn’t put a name to it. Then, one day, someone cautiously asked if we had ever considered Russell Silver Syndrome (RSS). They said they knew someone whose child had a similar appearance, and it reminded them of Huntley. It was a seed planted in our minds that we couldn’t ignore.
We reached out to Dr. Harbison in New York City, and within moments, she offered a clinical diagnosis of RSS. It was a bittersweet moment of relief, knowing the truth but also facing the reality of what it meant for our son’s life. A trip to NYC soon followed, where we met Dr. Harbison in person and learned more about what RSS would mean for Huntley.
Over the last decade, raising Huntley has been both a challenge and an incredible blessing. Despite being smaller and weaker than his peers, he has never backed down. He has a natural competitive spirit, and you can see the fire in his eyes when he’s up against kids who are much bigger and stronger than him.