COH: "How'd you hear about the Circle of Hope?"

Taylor (mother): I’ve known about the COH for a long time and, obviously once we had Charlie, it just sort of resurfaced again because of everything. Our friend, Kayla Ludwig, put us in touch and facilitated everything. It was super overwhelming and I was very anxious.

 

Austin (father): Yea, I was pretty anxious too.

 

Taylor: I had no idea what to expect because I hadn’t been to a benefit in so long, and at the last one I went to, I was there for just a split second. A lot has changed since then, so we thought “Cool, we’re gonna have a link sale and raise some money!” and I just did not have a clue.

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​COH: "What was life like before you got started with the COH?"

Austin: We were in the hospital for an entire month after she was born-29 days. And all of her doctors are in Houston– her neurologist, epileptologist, orthopedic surgeon, her ENT. The only doctor she sees that is in Beaumont is her pediatrician. So there was a time when we were going to Houston weekly for the first 5-6 months she was alive.

 

Which really adds up over and over and over again each week we had to go. It might not seem like much but altogether, plus missing work, her hip surgery which we ended up paying for almost completely out of pocket. Wasn’t covered at all. But she had to have it otherwise she’d never have a chance at walking. She had such a low chance of walking already.

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And during those first 5-6 months, we were finding out about everything else. Her epilepsy didn’t even start until she was almost 4 months old. She was constantly having regular check ups once and sometimes twice a week on her hips. Her MRIs, EEGs, brains scans, etc.

Taylor: And because she was intubated, that can cause a cyst to form on her vocal cords with her Laryngomalacia. If left unchecked or untreated, it could affect her breathing and speech.

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Austin: Her visits are a little less frequent now, about once every three weeks. Her neurology appointments are now every 3-4 months. But we were told she’d probably be seeing her doctor about her hips until she’s 18 years old.

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Taylor: And that’s just her doctor visits. That doesn’t include any medical equipment she needs. Like right now we’ve been approached about a stander for her to help her work on her muscles. Right now we get to use lender equipment, but eventually we’ll have to purchase everything.

 

Austin: That's another thing, and it sound ridiculous, but a normal baby, you can put them on the ground and let them run around. She’s 18 months old now and everywhere–our house, both grandparents houses, our office– everywhere we go, we have more than one high chair for her to sit in. It’s the only place she likes to sit and we can put braces around her and she’s able to actually sit up and entertain herself playing without us having to hold her up.

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Taylor: Yea, and we had quite a stack of medical bills from her birth. She was life flighted and that flight alone was $20,000…. and insurance didn’t cover any of it. The medical coding wasn’t coded as medically necessary to keep her alive.

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Austin: People don’t realize when the birth happened- that was traumatic in and of itself. But everything else since her birth, we're learning it as we go. We had a fundraiser last year (a garage sale), and it sort of pulled us out of hole we were in a little bit.

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Shannon H (grandmother): And we were all just helping cover what we could out of pocket. It was tough not being able to help them as much as we wanted.

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​COH: "How did the circle's involvement help you?"

Austin: Well, our goal for the benefit was to help cover part of a stem cell therapy we've been wanting for her. But with everything raised from the benefit, we're not only going to be able to cover an entire round of the therapy but TWO. And fingers crossed if we're able to, we might be able to cover part of a third treatment in a couple of years.

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Taylor: We've done a lot of research on this, and the results have been great. They said we could see a difference in mobility and functionality in as little as two days after treatment.

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Shannon H: And not only the treatments, but I think it’ll help relieve their stress. To be a new couple is stressful and then to have a baby is stressful, but to have a special needs child is even more so. And I know that in more than one way, it’s brought Austin and Taylor closer. I think it’s actually brought the entire family closer. I mean Charlie has touched so many people’s lives already and she is just so incredible to be around, but this gives them hope. I know they’ve looked at stem cell therapy since they came home from the hospital. But it was just too far out of their grasp. This has made it a reality.

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Dale D (grandfather): I mean you can only imagine, they are both very informed people, and if you know there is something out there that can help your child, but not being able to afford it. That would be pretty gut wrenching.

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COH: "What was it like to work with the Circle of Hope?"

Austin: I barely even knew what was going on because it was so well-handled. We did literally nothing and it was completely stress free. Well, as stress free as it can be.

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Taylor: It was fantastic. We really didn’t know a lot, but everything was taken care of.

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Sarah (grandmother): Fantastic. Amazing.

 

Shannon H: Yes, so much fun. It's such a family.

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Danny H (grandfather): I already knew a lot of these people and what they do, but being on the other side of it- it was very different. I never expected to be on the other side.

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Shannon: It’s very humbling. We’ve helped with benefits in the past, so for us to be on this side... 

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We've helped others never thinking we'd be a family that ended up being helped.​

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Danny: Well, you know, it’s difficult to ask, but when it starts happening, you’re overwhelmed with the amount of support you get.

 

Dale: The experience definitely hooked us.

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Sarah: Yea, just coming to the first meeting hooked us.

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COH: "What did you like most about the circle of hope?"

Austin: How literally everything was thought of. Whenever they told us they had a trailer for her to nap in and for us to rest… I was astonished. I was thinking, “Holy crap. Who thinks of that kind of stuff, ya know?”

 

Um, every last detail was thought of. We were so well taken care of that day by everybody, every single circle of hope person I saw walked up to us asking what we needed or if they could do anything for us right that very second.

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Shannon H: The camaraderie

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Sarah: Oh, the love. The generosity.

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Dale: And even the diversity of the issues and causes they support. You know, they support police officers, the military, Emmett never forgets to pray for our military, vets and first responders in every prayer. He never forgets people who serve the country. So it goes all the way from everything from a small baby to our military to praying for the leaders of the country.

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COH: "What do you want people to know about the circle of hope?"

Austin: I would tell them they need to ask how they can become a part of it. Because everybody should be. We’re definitely going to be more involved now.

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Taylor: Everyone we’ve encountered through this group has been just so incredibly willing to give. They’re absolutely selfless.

 

To me, it was really important how they're completely transparent about everything.

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Dale: They’re super transparent and don’t take anything off the top for themselves.

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Shannon H: This is just a group of really good people that have jobs outside of this and this is all a voluntary thing. They give with their heart. It’s all from the heart.

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Danny H: Yea, they’re not doing this for the money or to benefit themselves.

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COH: "What do you want people to know about the circle of hope?"

Taylor: Truly, I was surprised at the amount of people that are involved.

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Austin: Yea, the amount of volunteers that showed up the day of. I was not expecting 60 [volunteers] to come out. People were working every single part of the booth and the cooking, and everything. Those people gave up an entire Saturday for our baby, and I know a lot of people gave up a lot monetarily as well.

 

I mean, they’d been working on our benefit for months now and everyone is donating that time for free. We volunteer for the Nederland Hertiage Festival, so we know how it is to volunteer for something you’re passionate about. But all of this for one baby? All these people donated all that time and money just for her.

 

Obviously, she deserves the entire world and billions and billions of dollars and all the love and attention she could ever get, but all these people-more than half of them don’t even know her. They couldn’t pick her out of a line up of babies, but they were still there. Doing it for her. All the people at the weekly meetings leading up to the benefit, people there the day of, people going out getting donations, taking off on Fridays to do work for it. It’s all for her.

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Taylor: The amount of donations was shocking.

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Austin: The magnitude of the whole operation, I guess is the final answer. The magnitude of the whole operation was very surprising. So much bigger than I thought it was. I thought it was like four dudes getting together to do some link sales!

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Dale: How well connected and how hard working everyone is. Mike Norris, there’s no telling how many hours he spent out there getting donations.

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Danny H: Even though it’s a lot of sad situations, they do make it fun. They make it to where it's enjoyable for the family, the person going through everything.

 

And I think it’s important that they're faith-based. There’s a comfort zone in the group that just about anyone could find.