Last Tuesday, the Sam Houston State volleyball team lost to Texas State University, but SHSU still came up big off the court.
As the team was warming up, the inside walls of Bernard G. Johnson colosseum were plastered with small paper stars. Those stars represented support, health and most importantly, hope for a 7-year-old battling a chronic neuromuscular disease.
Head Coach Brenda Gray’s grandson, Boston Gray, suffers from Charcot-Marie-Tooth, a disease which kills the nerves in the arms, legs, hands and feet, resulting in effects similar to that of Multiple Sclerosis, although it is not fatal.
Tuesday night, $20,000 was raised in support for her grandson’s battle.
Before Boston was 6, his family started to worry that something may be wrong, but credited his lack of movement skills to his unusually tall, slender figure.
“He’s just like a regular kid, but he’s pretty tall and pretty skinny for his age,” Gray said. “We all noticed that he was falling a little bit more than other kids, but my husband and I have coached little boys’ baseball and we just thought he was getting too tall and falling more, but I knew his mom always wondered.”
Eventually, though, Boston’s inabilities grew.
“This past fall we all noticed he fell too much and he can’t get off the ground if he’s ‘Indian style,’” Gray said. “I was in the attic and he tried to go down the stairs front-ways and I said, ‘You can’t go down the stairs front-ways, you’ve got to go down the way you would a ladder, or else you’re going to hurt yourself’ and he said, ‘Grandma, but I can’t. I can’t get down if I can’t see my feet.’”
Shortly after, Boston was diagnosed with CMT at only 6-years-old.
CMT is one of the most common inherited genetic diseases, affecting an estimated 150,000 children and adults in the United States. It causes chronic pain, fatigue, muscle atrophy and sensory loss.
“Of course the whole family was in shock and disappointment, and when we realized there was no cure, we realized we were in a pretty good fight,” Gray said. “So me, being at this university, I just asked our administration if I could do a CMT awareness night for my grandson and there was no hesitation.”
Gray, her family and her assistant coach, Charlie Olson, spread news of the awareness night throughout the community and received response from not only Huntsville, but other universities, including Texas State and Stephen F. Austin State University, as well as former volleyball players and other athletics at SHSU like basketball and tennis.
The event, which raised double Gray’s goal, will be hosted annually by the SHSU volleyball team.
“I just wanted to make it known and get some of these people educated because I will be honest, when he was first diagnosed I had no idea what it was,” Gray said. “There’s a significant amount of people who have CMT, more than MS, which through all of this education is pretty astonishing.”
According to Gray, her grandson is better understanding his illness.
“We’ve all been around children that are different growing up and it’s hard,” Gray said. “I know he now knows that he has a disease. The last time he had to go to Houston he said, ‘oh Grandma, there’s a lot of sick children down there.’ and I don’t want to say, ‘well, you’re sick, too’ but what do you do?”
In spite of his diagnoses, however, Boston still remains as active as possible with his family.
“He does fatigue quickly but he’s not a complainer,” Gray said. “I don’t know the volume of his pain, but he gets very worn out. Our family doesn’t sit much, we’re very active. We’ve got to put some brakes on, though, because fatigue and chronic pain are symptoms of the disease and once you lose these muscles, you’re not getting them back.”
Boston still attends school and is as social as any other child.
“That boy is probably one of the most liked in his class,” Gray said. “The stars that they received from his class on the back said, ‘you’re my best friend.’”
