AVM
In high school and later at Middle Tennessee State University, Gray drew attention by leading drives called “Jaz’s Jammies” that collected more than 2,500 pairs of new pajamas for underprivileged kids in hospitals. Having spent much of her life in hospitals, Gray, whose nickname is “Jaz,” knew colorful pajamas could tell a child that people cared.
Now Gray has another goal: to make a documentary that would tell her story and the stories of others dealing with AVMS. In just a few weeks, working through social media, Gray has raised the minimum $5,000 she needs to make “More Than Skin Deep.” Working with a cinematographer and a film editor, she has created a trailer for her film that includes Suen. It can be seen online at morethanskindeep.me.
Recently, she met and had videotaped her talk with Hallie Goodwin, 11, of Collierville, who has a similar disorder called venous malformation that involves only veins. Hallie has had more than 50 operations.
Gray met Hallie at Gray’s parents’ home in Southeast Memphis, where she is staying until April. Her father, Eddie Gray Jr., is a project engineer for Fedex Express, and her mother, Janice Gray, is an insurance agent. Her sister, Kelsey Gray, 18, attends the University of Tennessee at Knoxville.
“I remember when I was 13 and not having anyone to talk to who had been through something like this,” Gray said before the meeting. “I hope I can say something to make her feel better and be an older friend to her.”
Hallie was born with a huge bottom lip the size of a fist that seemed to spill from her mouth. At times she has had to wear a net around it to support it and keep it moist, said her mother, Nancy Goodwin. But the Goodwins decided, “We’re not going to hide her away. We’ll take her out and do as much as we can so she’s used to it,” she said.
Treatment has involved many flights to Children’s Hospital Boston, where doctors have been able to stop the growth, she said, and plastic surgery has improved Hallie’s appearance.
She attends Southern Baptist Educational Center in Southaven, plays basketball and volleyball, attends summer drama camps and loves to perform on stage.
One of the hardest things, Hallie said, is dealing with little kids who stare and ask why she looks that way.
Hallie sees herself “as someone who is funny and is always messing things up,” she said. “But I don’t know if that’s what others see.”
Gray’s experience fighting AVM has been even more traumatic. Her AVM is in her right lower face, lip, chin and upper neck, said Suen, who is professor and chairman of the Department of Otolaryngology, Head and Neck Surgery at UAMS. Suen has helped lead research on AVMS for 15 years. In 2009, he helped set up an AVM research lab at Arkansas Children’s Hospital, one of the few such labs in the world, he said.
When Gray was 13, she suffered a severe infection that destroyed the right lower half of her face. Seeing her daughter under bandages, after part of the AVM was removed, “the whole right side of her face gone ... my knees started to buckle,” said Janice Gray. It was the first time she could not hide her fear. Suen had to reconstruct Gray’s face with skin, tissue and blood vessels taken from her shoulder and abdomen. The right side of her lower face is now paralyzed, he said.
Gray spent every Christmas and summer break having surgery. In the 10th through 12th grades, she had to leave Germantown High School and take homebound tutoring. There were times she wondered if she would ever leave her house again.
Nevertheless, she finished in the top 20 in her class.