When I first came to The Children’s Inn in June of 2016, I had no idea what it would mean to me. The next several months, though, certainly ended up being some of the most transformational months of my life. I first came to The Inn as a 19-year-old who had somehow managed to finish his first year of college, even while dealing with a harsh genetic disease known as sickle cell anemia. After staying at The Inn for nearly five months, I left as a man, entering his second year of college, having been healed from the disease that once shaped his life.
My blog usually celebrates biomedical advances made possible by NIH-supported research. But every August, I like to try something different and highlight an aspect of the scientific world that might not make headlines. This year, I’d like to take a moment to pay tribute to just a few of the many NIH family members around the country who, without pay or fanfare, freely give of themselves to make a difference in their communities. I’d like to start by recognizing my wife Diane Baker, a genetic counselor who has always found time during her busy career to volunteer.
When Taezia was 4 years old, an MRI showed a myriad of tumors crowding her organs and wrapping themselves around her spine. Without emergency surgery, Taezia would lose her ability to walk and become paralyzed from the neck down. Doctors knew they couldn’t remove the entire tumor, but their goal was to “debulk” it enough to preserve Taezia’s ability to walk and move around.
Isaac was born to fight. Arriving more than five weeks early by emergency C-section, it wasn’t just his way of coming into the world that made him different from his three brothers. While he initially looked healthy, his parents soon realized Isaac’s health was something he and the entire family would need to be fighting for every single day.
From Travis’ appearance and attitude, you’d never believe that, inside his body, many things are wrong. His legs are different lengths, his bones are prone to breaking, and he has a long, “deep” tumor running from his lower spine down across his hip to below his knee. He also has lower back pain from constant irritation to the nerves in his spine.
Terran Dupree, 16, is one of the most positive teenagers you will ever meet. With the brightest smile and the most humbling personality, you would never know that she is fighting a rare form of cancer.
In the words of Connor: “A lot of times treatment for cancer and chronic diseases is very difficult to sustain. A lot of times it hurts. A lot of times you have to be given anesthesia, invasive things like that. The Inn gives you somewhere to come home to, somewhere to end your day, a place where you can have closure. Thank you all for making sure we have The Inn to come home to.”
Six months after turning two, Eli Palmer still wasn’t walking, and his parents, Julie and Seth, had begun to worry. But they figured their fourth child was growing at his own pace and would soon catch up.
Annaleise Knight is an active, outgoing six-year-old. In her hometown of Grayslake, Illinois, she loves riding her bike, swimming, taking ballet and tap lessons, and playing outside on the swings and trampoline with her three siblings, Nicholas, 16, Braden, 7, and Catherine, 4. Although Annaleise has an exuberant personality, she did not always have the energy and strength to do her favorite activities.
Searching for answers, Johnathan’s mother, Rebecca, and father, Keith, applied for their son to be considered as a participant in a clinical trial at the NIH National Institute of Child Health and Human Development (NICHD).