BAKERSFIELD - One mom's fight to raise awareness has turned into a pledge of community support.
Five year-old Carter Stiles was diagnosed with Eosinophilic Esophagitis in January 2011.
EoE is a white blood cell disorder. The rare auto immune disease causes inflammation of the esophagus, leading to severe dietary complications and restrictions.
After Carter's diagnosis over 3 years ago, he has had 14 endoscopes with biopsies and 2 bronchoscopes. He has been admitted to the hospital 7 times, had numerous blood draws, skin prick testing, allergy patch testing, x-rays, CT scans, ultrasounds, MRI, gastric emptying study, genetic testing and is on numerous prescriptions.
Carter is a normal, active 5-year-old little boy.
The family started the walk locally to raise awareness and funding for the disease.
"There is no government funding, because the disease is so rare," said Brandy Stiles.
Saturday is the fourth annual Carter's Walk 4 Cured at Yokuts Park.
Since Carter was originally diagnosed, the family has come in contact with two other local families dealing with that disease.
"We are excited that they are joining our fight. I have been able to help them and be an advocate as they are starting their journey as well," said Stiles.
Carmen Roadarmel's 9-year-old daughter Grace was diagnosed when they lived in Texas. Family moved to Bakersfield about a year ago and was grateful to get in contact with the Stiles family.
"I was really stressed out. I was desperate to find someone else dealing with this disease. I didn't have anyone else I could talk to," said Roadarmel.
The disease has brought these families together to support each other and share information.
"Knowledge is power. There's a lot more information that others have that we had no knowledge of," said Roadarmel.
In most cases individuals suffering from EoE cannot eat a normal diet without restrictions.
Carter cannot eat regular foods. Right now his main source of nutrition comes from a specialized amino acid-based formula, that in most cases is not covered by insurance.
"We just want to find ways for these children to live a better life, course the ultimate goal is a cure," said stiles.
Carter's Walk has been able to donate more than $75,000 in the past three annual events combined.
100% of the funds donated goes directly to medical research for eosinophilic diseases.
Anyone wishing to participate in the walk can show up at 7:30 a.m. at Yokuts Park for late registration.
The walk begins at 8:30 a.m.
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