ELGIN — Spencer Hightower is much like many other 13-year-old boys: He loves sports — football, basketball and baseball are his favorites. He also loves animals. He has his own steer and hogs that he has shown at fairs and wildlife expos for several years.
But in one important way, the Elgin boy is very unlike most of his peers. In July 2008, his doctor told him he could no longer play the sports he loves so much and can’t even show his steer. The doctor said that if Spencer overexerts his body, he could be seriously injured or even die.
Spencer suffers from a rare condition called Ehlers-Danlos syndrome (EDS), which causes the connective tissues that support the skin, muscles and ligaments to become fragile and “hypermobile.”
According to the Ehlers-Danlos National Foundation website, www.ednf.org, these tissues stretch farther than normal tissues and don’t return to their original condition, causing many problems throughout the body, especially in very active people. The fragile skin and unstable joints found in EDS are the result of faulty collagen. Spencer’s mother, E’Lise Hightower, had long suspected her son may have EDS.
One of the hallmarks of the disease is having extremely flexible joints and stretchy skin, and she had a third cousin who had these symptoms.
“She would always pull her nose out real far and kiss her elbow and stretch her skin out and pull her ears out and flip her eyelids up,” E’Lise said. Her cousin did these things to be funny. E’Lise recognized some of the same facial features in Spencer that her cousin had — big eyes, thin translucent-looking skin, a pinched, small nose — but E’Lise had no idea how serious the condition was in her son.
Even as a small child, the Hightowers knew their son was different.
“He was always covered from head to toe with bruises,” E’Lise said. He cried and
complained of pain constantly, and his cry was unlike the cries of most toddlers, his mother said. His eyes were larger than average, so big that his eyelids didn’t completely cover them when he slept.
As he grew up, Spencer became more and more athletic but also suffered more and more pain in his joints. Eventually, it was Spencer’s hip pain and inability to walk that led him and his parents through a series of doctors until they finally found one who could diagnose his condition.
The Hightowers now know that Spencer’s form of EDS, which is called vascular EDS or Type 4 EDS, is the most dangerous and possibly fatal form of the disease. In vascular EDS patients, the worst possible outcome is the rupture of vital organs and arteries, potentially causing death.
Spencer was in the middle of baseball season when doctors told him that he couldn’t play anymore, said Greg Hightower, Spencer’s father. When he heard the news, Spencer sank down in his chair and a tear rolled down his cheek. He turned to his dad and said, “I realize I can’t play, but I still want to be a part of the team. I want to be in that dugout in the game and at every practice.”
And that’s what he’s done since. After enduring painful reconstructive hip surgery that had him in a cast from the waist down, Spencer got back into his sports, but in different roles. He went from being the starting shortstop for the school baseball team to being the bat boy, from being point guard on the basketball team to being water boy, from football player to videographer. Now, instead of showing his steer at local fairs and expos, he now shows hogs, which is less physically demanding.He’s also taken up golf and guitar since his diagnosis.
The Hightowers have two other children: Sadie, 9, and Brady, 11. Brady shows no signs of EDS, but Sadie and her mother have both been diagnosed with the same form of EDS as Spencer. Sadie isn’t active in sports, but even at her young age, her mother said Sadie is concerned about whether she’ll be able to have children.
“You wouldn’t think that would bother a 9-year-old, but that’s something that already weighs on her mind. Her goal in life is to become a mama,” E’Lise said. Pregnancy is very dangerous for a woman with vascular EDS, a danger that fortunately caused E’Lise no repercussions.
The Hightowers hope that by sharing their story they’ll help bring awareness to the rare disease and maybe meet other Oklahomans in similar situations. They also hope to share a message of hope for people suffering from similar conditions.
“You can overcome and still live life,” E’Lise said. “God’s blessed you with many other gifts and talents. Sometimes you just have to sit back and find them and use them in other directions.”