Garfield Resident's Experience Caring For Her Son Leads To Advocacy Through ‘Kyle’s Hope’

Mar 25, 2019

 

 

Following a personal experience with the challenges of seeking expert medical care for her son, Staci Flint of Garfield created Kyle's Hope. The organization advocates for other families and helps them secure quality care for their loved ones.

 

Flint spoke with 90.5 WESA’s Elaine Effort for our series 90.5 WESA Celebrates: 90 Neighborhoods, 90 Good Stories. Flint told Effort that Kyle's Hope refers to her son, who was born with a terminal disease.

 

Below are excerpts of their discussion.

 

The conversation has been edited for length and clarity.

 

On navigating the complexities of care procurement for her son:

 

[Kyle] was born with metachromatic leukodystrophy, which is a disease that progresses as he gets older. He was not supposed to make it 6 months, and then he wasn't going to make to 2. He is now getting ready to be 23, and he's still here with us.

 

At first they didn't know what [his illness] was. It took them until he was probably about 3 to actually come up with a diagnosis. They really had no idea. And I kept pushing and pushing and pushing, and I said, "No we're going to find this out. We need to look into this; we need to check everything."

 

I realized that there are so many people that have loved ones [with special needs], and they don't know what questions to ask or how to push the doctor, so to speak. They don't know how to make sure the doctors are doing everything that they can.

 

I would sit in the waiting room at the hospital, talk to some of the families, and just try to be encouraging to them and say, you know, "Why don't you ask them to look at this?"

 

On how her experience lead to the creation of Kyle’s Hope:

 

Out of that, I realized that people just don't know where to turn. So, I created Kyle's Hope, which is a where-to-turn service.

 

[We have clients with] Cancer, dementia, autism. We turn no one away.

 

We provide care management, support services, referrals for in-home services. We do autism support services. Whatever the need is for the individual, we make sure that it gets set up and that it's followed through. We do everything that we possibly can to make sure that every person has the best quality of life that they could have.

 

The difference that I think we're making—and I would hope and pray that we'll continue to make—is that they are still having the quality of life that they could have. No matter what the disability or the illness, they still deserve the best quality.

 

Flint, who has a doctorate in abnormal psychology and a day job, on how she finds the time to balance those other responsibilities with the management of Kyle’s Hope:

 

God is blessing me. You know, sometimes I think to myself, "Well, wait. How do I have time to do this?" But it just comes naturally; if they call me, I'm here. I take lunch breaks, and I go visit folks at the hospital, and I make sure this person is having therapy. I go after work, and I just keep it moving.

 

It's all about giving the best quality. I treat every client as if they were my son Kyle, and I know what I want for him. Everyone else deserves that too.