Support for this program is provided by the Weldon F Osborne Foundation.

The Schillhahn-Huskey Foundation.

And viewers like you.

Thank you.

On today's show well feature two dedicated nonprofits.

Both are committed to helping those affected by physical health challenges.

One raises awareness and support to those impacted by epilepsy.

The other offers treatment to those born with congenital craniofacial differences.

We are stronger together.

Chattanooga.

So stay tuned.

Welcome to Chattanooga.

Stronger Together.

I'm Barbara Marter.

The Epilepsy Foundation of Southeast Tennessee is helping people affected by seizures and epilepsy, by building awareness and a network of support.

Angela Mininger is the executive director.

Thank you so much for being here with us today.

Thank you.

I, I need to learn more about the Epilepsy Foundation, southeast Tennessee, because when we had talked earlier, you had shared some examples, and it made me think back of a time like when I was in high school and we had a student with a seizure.

So let's start out with what is the Epilepsy Foundation and what services do they provide?

Yeah, thank you for asking.

We are a nonprofit here in Chattanooga, and we our mission is to raise awareness, reduce stigma, and provide resources and community for people impacted by epilepsy.

So we know that one in 26 will be diagnosed with epilepsy at some point in their lives.

But for us, when we talk about community, we know that that doesn't just mean the person who's diagnosed with epilepsy.

It means their friends, their family, their teachers, siblings, parents, anyone who's caring for them are also impacted by epilepsy.

So our services provide support for all of them.

Yeah.

So I know that there you also do training.

Mm hmm.

Because you talked about, you know, that it affects not only the immediate family, but it's the surrounding environment, the teachers, school, whatever, like I had mentioned earlier in school.

What kind of training do you do for those that really want to understand and not hurt but help somebody who has a seizure?

So we have a full time educator and she goes into schools, she goes into fire departments, talks with first responders, any business employers who want their staff to be trained, school nurses, support staff at schools is really important to train them about how to recognize seizures, the different types of seizures and what to do if someone is having a seizure.

It's actually not that complicated to know how to respond when you know you know what to do.

And so they're just off, you know, easy steps you can do to keep someone else safe and to keep the environment safe.

I think one of the examples that you had was a young man who had gone through your training was at all these.

And you want to tell this?

Share that story.

Sure.

We did receive a phone call from a gentleman who said he had recently received our training.

He had never really heard or experienced epilepsy or seizures before.

He'd never been around someone who had a seizure.

And the next week he had been in Aldi and someone up at the register had a seizure and he was the only one.

Everyone is kind of in a panic and no one really knew what to do, and he was the only one who knew exactly what to do to keep that person safe.

And and it was just ironic that the week before he had received his first training and how to respond to someone having a seizure.

So in that case, it was appropriate to call 911 because that person, they didn't know that person.

So they didn't know if he had had a seizure or epilepsy before.

And so that was the correct step.

And then he just stayed with him and kept him safe.

And it was just it was a some great feedback.

And, you know, we always love to hear from people who who is impacted.

Well, it also, too, it's like we made a difference in one person's life.

Or actually two people's lives.

I think that's that's awesome.

And I love the fact that you're educating our first responders, our police officers, firemen and all that, because someone who has an epileptic seizure is not necessarily laying on the ground twitching like crazy.

They can display it in different ways, can't they?

Like they're an alcoholic or they're on drugs, but they're actually not.

Right.

A part of their brain just stopped functioning or whatever.

Right.

So there are different types of seizures.

And we the most common is a tonic-clonic seizure, which is someone who is convulsing on the floor or in a chair.

But that is the most common.

And what people tend to think of when they think of epilepsy and seizures.

But we want the community to know that there are more than just that type of seizure.

So, for example, there are there's a seizure called an absent seizure.

And that's often seen in children especially.

So we see that a lot in elementary schools, middle schools, where a child is what appears to be daydreaming, and the teacher or staff who who is with them thinks that they just aren't paying attention, or maybe it's ADHD or like I said, daydreaming.

And when in reality they are having a seizure where they are just kind of zoning out for can be as little as 10 seconds, but it could be continuous, you know, 10 seconds and then they are more aware and then another 10 seconds.

And and so it's really important for educators especially to know the types of seizures so that they they can be aware.

You know, we do hear of children who I've been I was an educator for a while.

And so you tend to pick up on some things and you, you know, a child might get in trouble for that.

But if a teacher knows what to look for, then, you know, they can they can know how to respond in a better way.

But you mentioned first responders, and that is also very important.

There is a seizure called a complex partial partial seizure where somebody will still be walking around functioning.

We have a story of a man who is known to sweep the sidewalk and he will end up down at his neighbor's house and not know how he got there.

And so to the outside, it might seem like a strange occurrence.

It could be a wandering, it could be a repetitive movement.

It could be sometimes undressing.

So they they're up and walking around, but they're doing an activity that is out of the ordinary to the outsider.

And so if you saw someone walking through your neighborhood who was doing that that you don't know, you might call the police and say there's a strange activity going on, and then the police come.

And if they try to restrain that person, their response is going to be to push back and to fight back.

And so, again, it might look like something like intoxication or drugs when in reality they are having a seizure.

Wow.

And so there are cases where people have, you know, been been mistreated just because it was misunderstood.

Right.

They're not intending to fight back.

It's a true medical condition.

They have so other than the teaching and educating, what other services does.

Do you serve?

You provide for our community.

We provide several free supports services for people impacted by epilepsy.

And these are prescription assistance.

So for anti-seizure medications, we are able to come in and kind of bridge the gap and help pay for those medications.

For someone with epilepsy, neurology assistance, we have people who we know aren't seeing a neurologist because they just can't afford it.

And so we are able to come in and pay for that initial visit, a follow up visit, some testing.

And we have found that to be extremely impactful in the lives of these people who are just avoiding seeing their neurologist because it's just not feasible for them.

And then we provide we started this is new this year, but it's really taken off.

It's our transportation assistance program.

And so for this program, because we know that people with epilepsy have to be seizure free for six months to a year before they're able to drive.

Oh, wow.

And so we it's very important for us to empower our community and give them back their independence.

You know, for myself, I can only imagine what that would be to have my license removed after being independent for many, many years.

And so we want to step in and again, bridge a gap.

We do this primarily by providing digital Uber gift cards.

But we've also worked with Carta, Car to Caravan, etc.. And so we'll we'll work.

We have some flexibility there to work with whatever suits that person the best.

We most of our clients are are reaching out for Uber.

It tends to be the most common.

Yeah, true.

That's true.

So one in 26 are going to be diagnosed.

Does it do you see it in young people or do you see it more in older people?

I mean, is there rhyme or reason to it?

Epilepsy tends to be diagnosed early in life and then later in life.

So as people, you know, when there are children and then as they begin to age, but epilepsy doesn't discriminate.

So we see it all across the all across the gamut and doesn't discriminate on age, race, age, gender.

So and it could be caused from either a traumatic head injury or something going on.

Genetics in the DNA, scientists really don't know what causes it.

But there is medication that can control it, I think.

Right?

Correct.

So 65% of people do not know why they have epilepsy.

Some people have epilepsy due to a traumatic brain injury and car accident and a fall stroke and infection.

But the majority of people do not know why they have epilepsy.

And there are medications to help control their seizures.

There is not a cure for epilepsy.

So we you know, there's management and there's control.

Epilepsy is not a one size fits all.

Yeah.

And so a medication, it's really just kind of for each person their own specific treatment plan.

Okay.

Let's talk about Studio E. I think that's a cool idea.

Yeah.

So Studio is our art therapy program for our children who are impacted by epilepsy.

Mm hmm.

So we've been doing this for many years.

We host our studio E sessions once a month at the Hart gallery We have an art therapist who has worked with us from the beginning, and we love her very much.

And the children come in for 2 hours.

Like I said, once a month, and they have an opportunity to be with other friends who are also diagnosed with epilepsy.

So it's a safe environment, both physically and emotionally.

We have, you know, have had children have seizures at Studio E, And for for them, it's really it's not shocking to their friends.

They just they know what to do.

They you know, are you okay?

Do you need anything?

And then they go back to their art.

There's no stigma attached to it.

It's just, you know, I sat in there and I've the children talk about what medicine or you want.

What medicine or you want.

Oh, you wet your pants when you have a seizure.

Me, too.

I mean, there's just a lot of camaraderie and shared experience and shared stories, and it's just very safe for them.

So we have we've recently started opening it up to we have a couple of children who come who's sibling has epilepsy or parent has epilepsy.

And so they really enjoy that as well.

the parents have made great friendships at Studio E it's also we don't require the parents to stay.

So it's also an opportunity for them to get a small break.

It's, you know, 2 hours.

They're downtown, so they're able to go off and do something they want to do.

Perfect.

Angela, thank you so much for coming in and sharing what Epilepsy Foundation of Southeast Tennessee does.

I've been educated and I hope our viewers have been educated and we'll check your website.

And if they think that anybody in their family has a problem to call you to reach out to you and you can give them more information and help.

Absolutely Perfect.

Thank you.

We'll be back in a moment with Susan Mathews, co-founder of Love Without Reason.

Stay with us.

We want to know how you serve your community.

Send us photos or videos of you or your family volunteering, and we may feature it on a future episode.

Email stronger at WTCITV dot org or use the hashtag stronger WTCI on social media.

Welcome back.

Susan Mathews is joining us.

She's the co-founder of Love Without Reason, an organization that provides medical camps which screen and treat those born with congenital craniofacial differences.

They're also dedicated to the fight against human trafficking.

Susan, thank you so much for being with us today and share Philip's story with us, because I think that's the whole purpose for starting your nonprofit.

Absolutely.

Philips story is a long one, but it began 23 years ago when I was pregnant with him.

The doctors basically told me at my ultrasound that Philip was born.

Philip had a cleft lip, cleft palate, multiple facial differences and many holes in his heart.

And so they actually told me that he wouldn't survive birth because they couldn't find his stomach in the ultrasound.

But and they advised me that even there was a risk for me to continue the pregnancy.

So they told me the best thing to do would be to terminate the pregnancy.

I wanted to believe that my child would live.

It was our first baby, and so we prayed for a miracle.

And in our follow up ultrasound, they found his stomach right where it was supposed to be.

So the pregnancy went fine.

And in July of 2000, Philip was born alive.

But as you know, the ultrasound is pretty limited on what it can see.

Right after Philip was born.

When they scanned his brain and his face, they told me that he didn't have a right eye or right ear, and his jaw was very underdeveloped on the right side.

He was missing the center part of his brain called the corpus callosum.

And all of that seemed to make them suspect that he would have mental and developmental delays, have seizures for the rest of his life and probably be bedridden, never be able to walk or talk.

So we had a lot facing us at that moment.

And plus, with cleft children, feeding and nutrition is a big issue.

So and he was in heart failure too, after he was born.

So we had to do his first surgery when he was ten days old and we had to do a G tube.

That's how we fed him for the first two years of his life.

Wow.

So he had a lot of struggles.

But we continue to see him grow.

And in the middle of all of these transitions and growth, he started to get stronger.

And lo and behold, he started to crawl and started to walk.

And by the time he moved from sign language to being able to speak by the age of three and by the time his siblings were born, the state of Tennessee evaluated him and said Philip has no developmental or mental delays and he's ready for kindergarten.

So he went off into the school and he got accepted into the McCallie School at sixth grade.

And he was so proud to walk across the stage on May 19, 2019 with his high school diploma and a B average GPA.

With a B average, I mean, you know... but I love what you told me earlier about Philip may not need McCallie, but McCallie needs Philip.

Yes, the admissions team said that.

Yes.

And I love that.

That he was accepted into that little group, that little community right there.

Absolutely.

From the moment that he was there on the campus, it was a it was a beautiful thing to see that, you know, Philip had a prosthetic eye and a prosthetic ear.

And it was not uncommon that his ear would fall off and, you know, he'd be under the desk or something.

And the boys would be like, Philip, your ears on the floor again, you know.

I mean, they just said they accepted him.

Yes, they accepted him and they loved him.

And and I have to tell you that even at his grave, there was a round of boys that they stayed with him until he was laid to rest in the grave.

Mmm.

Thats amazing.

So what was the saying that Philip always said he.

He came up with the phrase that I want to work until the world is cleft free.

And that's why you created love without reason?

Absolutely.

We understood the pain that Philip was going through.

And also we could not even imagine the pain and struggle that the parents of these children go through when they don't have access to health care.

Right.

Right now, being born here in Chattanooga, Tennessee, we we have a doctor, Sargent, who I believe you said, did all of, what, 26 surgeries or something like that?

Yes, 25 surgeries on Philip.

We in the U.S. are so privileged to be able to have these services, these young people in the foreign countries don't have this.

And so I think that then starts the story of Love Without Reason.

Absolutely.

You know, we're from India, and we knew that if Philip had been born in the places that we were raised, there was no there was not a cleft team that was ready to take care of him.

Even an education system that would be accepting him speech therapy and nutrition, so many things and resources that are involved with cleft children.

And so that's when we began to in 2007 is when we started Love Without Reason.

And we were in search of partners and hospitals that would allow us to be a part of their partner with them and be able to find children in the rural areas in general, in the large cities.

There are resources.

Are there avenues that patients can find help, but it's not as convenient.

I think in the US, in all 50 states, there's probably at least one cleft and craniofacial center in every state of the United States.

But in countries like Zimbabwe, where we work, or Kenya, I mean, there is a five year backlog of children waiting for surgery in Zimbabwe alone.

Wow.

And that was before COVID.

Oh, that's true.

So to be able to reach these rural areas with these services, you have established medical camps.

Yes.

So tell me about those.

So basically, we form a team of medical professionals.

They can come from anywhere around the world of specialist with cleft and craniofacial surgeries, anesthesia, pediatrics, nursing.

And they come together for a one week medical camp.

So we do a screening day where we evaluate maybe 100 to 200 cleft craniofacial children and adults.

We that we have taken care of many even up to 80 years of age, untreated clefts.

And they come to these medical camps for help because no one has helped them before.

They have never had any resources.

And then we spend Monday to Friday doing surgeries to help these children and adults.

So every day is a different program that they go through.

I mean, you're looking at a nutritionist.

You're looking at vision.

You're looking at holistically, not just what you see on the outside, whether it's a cleft palate or something like that.

You're actually looking at all of their needs.

I'm trying.

We are doing our best to do that now.

We haven't reached vision yet, but definitely speech therapy, speech and language pathology, because feeding is a tremendous challenge for these children.

And when I tell them our story, they don't know what a G tube is.

You know, that is not easily accessible everywhere.

So then we have to bring in specialized bottles with special nipples and feeding apparatus to treat, to take to be able to feed these children and help them to grow so they they don't fall ill or get malnourished and pass away from that.

So what countries are you currently working in?

So currently in Uganda, Zimbabwe and Kenya.

And in India.

And in India.

Yes.

So, okay.

So five days, evaluation, surgeries.

What about post-op?

Who handles the post-op?

So we typically will partner with a local doctor there and a and a hospital and a group so that when we leave, we're able to have the follow up of all of these patients managed by the local surgeon that's there.

And they are the ones who will see the patient on follow up recommend.

And if there need to be sutures removed or whatever needs to be done or something, a complication comes up.

They're the ones who will be managing that as well.

And you've been doing this since 2007.

We have been doing the cleft surgery since 2012.

Oh, okay.

2012.

So we're going into 11 years almost, and we're working in our 11th year.

Wow.

That's amazing.

And I think you've done 840 surgeries.

So far.

So far.

Yes.

That is so amazing.

Let's switch over to a very difficult subject, sex trafficking.

What are you doing in that?

How are you trying to alleviate that?

Well, Barbara, we didn't know what we were supposed to do when it came to sex trafficking.

What we found out was that one of our patients actually who came to our camp screening camp when we evaluated her, she was 30 years old, very malnourished.

And looking at her, she didn't have a cleft, but she had what was called an caloric jaw.

She was born with scar tissue over her TMJ joint.

Oh.

So she couldn't open her mouth more than a millimeter or two.

And that's why she was malnourished.

But we could do her surgery.

We were planning for it.

Unfortunately, she had never seen a doctor in her 30 years.

So we had to do all the labs and everything.

And in that process, I found out that she was HIV positive.

So she needed to go for treatment.

And when we tried to research what was her story, it turns out that she was trafficked from a young age because she had no other avenue, no, you know, no one was there to protect her or take care of her from her adolescence.

And she was basically exploited because she was not educated.

She wasn't able to get a job.

And she was hungry.

She was trying to sustain herself.

So that's when we understood the link between human trafficking and craniofacial birth defects.

So we were trying to educate our parents.

Now, when we do these medical camps, make them aware of human trafficking and help them to understand what is going on and how valuable their children are.

And so to keep them safe, get them educated and make them productive citizens of their country.

Wow.

So your story, or I should say Philips story is just truly touching.

But the fact that he used his he didn't see his disabilities as disabilities.

He used them as gifts.

And so taking that and trying to take that to other people, other children, education through this.

So thank you so much for coming in and sharing Philip's story and your story.

And I hope our viewers have learned a lot about it.

So thank you so much.

Thank you so much.

And thank you for joining us.

We hope Chattanooga: Stronger Together offers new perspectives on issues that are important to you.

If you're looking to make a difference in our community, let us know.

Email us at Stronger at WTCITV dot org or use the hashtag Stronger WTCI on social media.

I'm Barbara Marter and we'll see you next time.

Watch even more of the shows you with WTCI Passport on the free PBS app.

Download it today!

Support for this program is provided by the Weldon F Osborne Foundation.

The Schillhahn-Huskey Foundation.

And viewers like you.

Thank you.