Rally for Jaxon
By Blake Belden, staff writer
Aug 4, 2014, 15:21
BLAKE BELDEN/HOPEWELL NEWS/NEWS-PATRIOT Around 100 people showed up to the glow-in-the-dark 5k to raise money for Jaxon Gibbs, who has a rare eye disease.
COLONIAL HEIGHTS — The community came together on Wednesday night for the first ever Glow at Night for Jaxon’s Fight 5k Walk, a nighttime glow-in-the-dark fundraiser at White Bank Park to help raise money for a surgical procedure for a little boy with a rare eye disease.
Jaxon Gibbs, almost 5 years old, was first diagnosed with Coats disease in December 2011, after previous medical speculation thought that he might have had retinoblastoma, a form of cancer. After doing a series of CT scans, they were coming back with a lack of calcium deposits in Jaxon’s eye, which led doctors to believe that it was not cancer, and perhaps Coats disease.
Coats disease is characterized by the abnormal development of the red blood vessels situated behind the retina to a point that they break open and leak into the back of the eye causing the retina to expand and often times completely detach. The progression is slow, and if not treated early enough, as is the case with Jaxon, can result in a total loss of vision in the affected eye, according to the Jack McGovern Coats Disease Foundation.
Coats disease affects fewer than 200,000 people in the United States, and is officially listed as a rare disease by the National Institutes of Health, of which there currently exists no cure, according to the JMCDF.
Medical professionals are still unclear as to why Coats disease develops in children.
Jaxon is completely blind in his affected eye, and to prevent his eye from continuing to shrink in the later stages of the disease, and to hopefully prevent the removal of his eye, he is being fitted for what is called a scleral shell, according to Jaxon’s mother, Elke.
“[Jaxon] still has 20 percent more to grow. And as a growing boy, you want his face to grow properly. For that to happen, he needs something in place. Instead of removing his eye — We’re trying not to do that. We want to do that as a last possible answer for Jaxon. — ... We’re doing something called a scleral shell to put in place to help make his face grow properly,” Elke said.
Since his diagnosis, the Gibbs have raised more than $12,000 to go to the Jack McGovern Coats Disease Foundation, one of the few institutions that exists to promote awareness of the disease and push toward finding a cure, Elke said.
“My husband [Scott] and I have just always made that promise to always try to raise awareness for others, to help others so that they didn’t have to go through that,” Elke said, hoping that more awareness will help diagnose Coats and other eye diseases earlier on.
Because they had previously given all funds raised over the years directly to the JMCDF, Elke said the funds raised from Wednesday’s glow walk will be used to pay for Jaxon’s scleral shell medical costs.
With 62 registered adults, and a total of around 100 participants, the Gibbs family raised approximately $1,700 to help with Jaxon’s scleral shell procedure. As of Friday, Elke said it was unclear what the total costs will be for the scleral shell procedure.
Elke said that one of the best ways to tell if your child might have Coats disease or some other eye condition is if you can see a consistent glow in one eye using flash photography, much like red eye but instead with a yellowish glow.
Jaxon with his mother, Elke, and father, Scott.
Red eye is caused by the light reflecting off the red blood vessels behind the retina, therefore a Coats disease glow happens when these blood vessels burst and leak into the back of the eye.
“In Coats disease specifically, when the red blood vessels burst that’s what causes the retina to detach. And if you don’t catch it, the blood vessels keep bursting and bursting and it kind of creates a leakage of cholesterol. ... And it creates that fatty like kind of cholesterol, and it’s reflecting off that instead of the blood vessels,” Elke said of why Coats disease will produce a yellow glow in the eye in flash photography.
Jaxon ran around with face paint and a big smile on Wednesday evening, and Elke said his positive attitude has been a primary factor in helping them cope with Jaxon’s disease over the years.
“Just Jaxon. How much he’s just had to overcome. He lets nothing stop him. I mean, he plays soccer. He plays basketball. He plays golf. At the age of 2, he was playing golf and its just amazing that he can hit a golf ball with his depth perception. ... You know, we have to stay positive in order for him to stay positive about it,” Elke said.
Elke said they hope to establish last week’s first time glow walk fundraiser as an annual event.
“If we can help a family out, we’ve done our job. We’re doing that, but we’re also showing Jaxon that we’re fighting with him,” Elke said.
For more information regarding Coats disease and other related eye disorders, go to the JMCDF website at coatsdiseasefoundation.org or knowtheglow.org.