Walking to fight a rare disorder

By Lurene Heyl
Baltimore Watchdog Staff Writer

Since 2012, those who have been affected by the eosniophilic-associated disorder disease have come out and supported the annual Hope on the Horizon walk.

This is not any ordinary walk, but a walk with a bigger mission.

Deneen Kettell, the Walk Chair in charge of the event, along Julie Forrest, have been setting up and organizing the walk for seven years now. Kettell has gathered sponsors, volunteers, and a strong support system that dedicate their time for the event.

“Each year it gets bigger and bigger,” Kettell said. “I do it to bring awareness.”

Around 100 people register for the walk each year, with about 70 people who come out and participate in the walk, Kettell said.

The first ever HOPE on the Horizon walk in Honeygo Run Regional Park. Photo by Deneen Kettell.

On May 19, the 9th annual HOPE on the Horizon Walk will be held at the new location, Mariner Point Park in Joppa, Maryland, from 9 a.m. until noon to show support for those with the eosinophilic-associated disorder.

The walk, which is partnered with the American Partnership for Eosiniphilic Disorders, raises money that is used for the Hope on the Horizon Research Fund, which looks at finding treatments and a potential cure for the disease.

Each year, around $4,000 to 5,000 is raised from the walk. Kettell’s goal for next years walk is to hit $10,000.

While many of the walks in the past years have been rained on, Kettell hopes this year’s walk will be dry and sunny.

Kettell’s oldest son, who was first diagnosed 10 years ago at the age of 14 with the eosinophilic disease, also known as eos, said that many doctors at the time were not familiar with the disease.

The disease stems from a type of white blood cell that helps fight off different types of infections. When a person has more than the actual amount of white blood cells that is needed in their body, they may have the eosinophilic-associated disease. While the disease is still rare, it is on-growing. At this time, there is no cure for the disease.

“We were crying,” Kettell said. “No government funds or research was going on for this.”

It wasn’t until her son was seen by the doctors at Johns Hopkins Hospital that they were able to immediately diagnosis him with the disease.

While her son was diagnosed quickly, not all are. “So many kids go undiagnosed and suffer for years until they find out,” Kettell said.

Kettell says her passion in holding the walks each year is not only to bring awareness about the disease, but to bring everyone together and have unity among one another with support to give.

“I’ve had so many parents say that they’re going to keep in contact and talk to each other from meeting each other at the walks,” Kettell said.

Many sponsors have volunteered, bringing different resources for the walk. One of the sponsors includes Giant, which will provide fresh fruit and water for the walkers. Other volunteers have given out coffee and other refreshments for the walkers.

While the hard work and preparation prior to the walk may be overwhelming for Kettell, it is worth every second.

“I got to tell you, it’s very tiring but someone’s got to do it,” she said. “I can’t let these kids down, I can’t let anyone down. A mom just has to do what she has to do and it’s worth it.”

Heidi McKinsey, whose daughter is diagnosed with the eos disease, has been participating in the walks for four years. She collects toys as one of the prizes that the kids may win from the raffles they hold after the walk.

“It’s one way I can help out a little bit,” McKinsey said.

McKinsey says her daughter enjoys seeing and playing with the other kids at the walk whom have the disease while being able to connect with the community.

“It’s good to talk to other people that are going through the same thing,” she said. “It’s nice to talk about the journey with other parents and hearing what they have been through and what helps them.”

“Deneen does such a great job and is a wonderful person,” she said.

Tiara Glover first found out about the walk through a Facebook group a few months after her son was diagnosed, that connected parents and family associated with the disease.

Glover’s son, Jaiden, was diagnosed at only 18-months-old. At this time, her son was extremely sick and was in need to find any resources that could help.

“It’s exhausting because you just want to have your child be okay,” she said.

Since participating, Glover said the walk has helped her to be able to find other moms to relate to who go through the same experience as her.

“Reach out to whatever resources you can find,” Glover said. “Lean on those other moms and get a great team surrounding you.”

Those who are interested in participating and donating towards the walk can register online through eventbrite.com

“I hope someone reading this that knows or has a family member with eos, can potentially start their own fundraiser or even a walk of their own to bring even bring more awareness and help one another out,” Kettell said.