“When we first arrived at the hospital, the nurses referred to Myles Booker as the “mystery” baby because his vitals told us he was sick but his demeanor would make you think otherwise,” says Heather Vinson.
Heather’s youngest of five children, one-year-old Myles, affectionately known as Myles Booker, was seven months old when she brought him to their pediatrician, because he was lethargic and not acting himself.
Myles Booker was rushed by ambulance from the pediatrician to the Emergency Room and placed on oxygen. Doctors and nurses spent 3 and ½ weeks trying to diagnose Myles Booker, but results were inconclusive. He was sent home with what they believed to be a temporary immune deficiency.
At home, he was on oxygen for a week and had monthly IVIG infusions. Almost three months later, Heather began to notice that something was not quite right. “We visited his immunologist, pulmonologist, and pediatrician. He was placed back on oxygen at home and then one night, his oxygen needed to be doubled. We found ourselves back in an ambulance and this time on our way to Children’s Hospital of Richmond at VCU (CHoR).”
Once at the hospital Myles Booker received breathing and feeding tubes. Blood samples revealed that he had Hyper IGM, a rare genetic disease that prevents the body from producing antibodies to fight off infections.
During Myles Booker’s hospitalization, Heather stayed at CHoR while husband Matthew remained at their home in Ashland, VA to care for their four older children.
“I remember meeting Dayna from Ronald McDonald House Charities of Richmond. She stopped by Myles Booker’s room and offered me the keys to a Ronald McDonald Family Room – an offer that made all the difference in the world.”
The Ronald McDonald Family Room, located just footsteps from Myles Booker’s hospital room, offered Heather respite from the busy hospital, a private bedroom and bathroom.
“I’m a really light sleeper, so it was impossible for me to rest in his room with all of the nurses coming in and out and the beeping machines. Without good sleep, I became even more emotional and it made it hard for me to be a good support system for Myles Booker. When I slept in the Ronald McDonald Family Room it was like night and day- I was a completely different and much stronger person when I was well rested.”
After three and ½ weeks in the hospital for the second time, Myles Booker’s oxygen levels stabilized, his feeding tube was removed, and he passed a series of tests showing he was healthy enough to finally go home.
He now has weekly IVIG infusions and is on an antibiotic to boost his immune system. Despite ongoing medical challenges, Myles Booker’s mom describes him as sweet and cuddly, and so strong. He loves playing with his drum set, eating bananas, and bringing joy to their family of seven.
Myles Booker’s medical journey is not over. As Heather shared, “I know we will have future hospital stays and I’m hopeful that whatever hospital we find ourselves in will have services provided by RMHC. For me, being able to get a good night’s sleep, take a hot shower, and have a meal- all while being close to my son- sustained me and gave me the strength I needed to care for Myles Booker.”