0:02

Hi there, and thank you for joining us on

0:04

AVM Alliance, a pediatric podcast

0:07

for families and friends whose lives have been

0:09

affected by traumatic brain injury, rare

0:11

disease, brain disorders, or

0:14

stroke. The purpose of this podcast

0:16

is to focus on the kids side of brain

0:18

injury with honest talk, news,

0:20

information, and discussion for our

0:23

community. Being a parent of

0:25

a medically complex child is an extremely

0:27

difficult path to suddenly find yourself

0:29

on. I'm Raylene Lewis, and

0:31

my son Kyler suffered a hemorrhagic

0:34

stroke at age 15. Thank

0:36

you for joining us. A happy

0:38

new year to all our listeners.

0:41

As we begin 2024,

0:43

we are overwhelmed with gratitude

0:45

for each and every one of you who

0:47

have been a part of our AVM Alliance

0:49

family this past year. Your

0:52

support, generosity, and kindness

0:54

have helped us create a pediatric

0:57

AVM aneurysm and stroke

0:59

community. Here for each other.

1:02

Thank you so much for your incredible

1:04

support. And here's to a year

1:06

filled with even more relationships

1:08

and victories in 2024

1:11

stroke has no age limit.

1:14

And if you would like more information on

1:16

brain AVMs, AVM Alliance,

1:18

an official 501c3 nonprofit,

1:21

now has its own website, www.

1:24

avmalliance. org, and

1:27

on it you will find lots of information

1:29

as well as personal stories. Also,

1:32

we wanted to let our listeners know that

1:34

there are several studies looking for participants

1:37

right now. For children who had

1:39

a stroke when they were born, there is the I

1:41

Acquire, used to treat 8

1:43

to 36 month old children. For

1:46

children who had a stroke when they were 1

1:48

month old or older, there

1:50

is the T O P P S, transcranial

1:53

direct current stimulation option.

1:56

It uses a form of stimulation

1:58

in conjunction with conventional

2:00

occupational therapy for arm weakness.

2:03

And, finally, there is a vein of

2:05

Galen Malformation Genetics Research

2:07

Study. Parents whose child has

2:09

received a VOGM diagnosis

2:12

and wish to participate are provided

2:14

a special Q tip. to swab their cheek

2:16

and the cheek of their child. If you

2:18

would like more information on any of these

2:20

studies, you can find it on the AVM

2:22

Alliance website under Research

2:25

Studies or email us info

2:27

at avmalliance. org.

2:30

And we will be happy to send you more information.

2:32

And for our international listeners with

2:34

a VOGM diagnosis. Yes,

2:37

you are also eligible and encouraged

2:39

to participate in this study. Today,

2:43

I'm excited to introduce our listeners

2:45

to Amy Waggoner, who has graciously

2:47

come on to tell us the story of her medically

2:50

complex child, Luke, and Kathy

2:52

Derr. Founder and director of family

2:54

engagement for the absolutely fabulous

2:57

organization. Everyone should know

2:59

about a kid again created

3:02

to provide kids with life threatening conditions

3:05

and their entire family with Opportunities

3:07

to forget about the stress that comes

3:10

with having a child with a medical condition

3:12

A KID, again, is a national organization

3:15

that provides year round activities,

3:17

all completely planned and cost

3:19

free. They serve parents and

3:21

siblings just as much as the enrolled

3:24

child, and they offer group activities

3:26

so that families can connect and form

3:28

relationships and support one

3:30

another. Kathy and Amy,

3:32

thank you so much for joining us. Thanks

3:35

for having us. Yes, thank you.

3:38

I just wanted to get started. Amy,

3:40

why don't you tell us a little bit about

3:42

your story about Luke's diagnosis

3:45

and a bit about what your journey has

3:47

been so far?

3:48

Okay so basically Luke is

3:51

16 now. He was diagnosed with

3:53

generalized idiopathic epilepsy

3:56

at the age of 5. So

3:58

when Luke got that diagnosis, up until

4:00

that point, we have lived a pretty normal

4:02

life is what I would call it. On the go

4:04

all the time. My husband and I both work full

4:06

time jobs. I actually just kind

4:09

of thought, hey, he'll take a man. And

4:11

as long as he's kind of compliant with that medication,

4:14

he will be, you know, his seizures will be controlled

4:16

and we'll go on our merry way. But, that

4:18

has not been our journey at all.

4:21

Luke's epilepsy from a very young

4:23

age from that diagnosis. He was very

4:25

difficult to treat. That first

4:28

year was just basically I think

4:30

back on it. It was like a nightmare. The

4:32

anxiety that just when is the next

4:34

seizure happening, which was daily, nightly

4:37

changing medications in the hospital,

4:39

out of the hospital and So about a year

4:41

into it, I was just kind of at my wits

4:44

end. My family was stressed out.

4:46

You know, I was kind of private about the whole thing

4:48

and just So we didn't have that really community

4:51

or support system and

4:53

that Luke was in the hospital and

4:55

the doctors called us into the consult

4:58

room and they're like, listen,

5:00

he has gotten severely worse. His

5:02

seizure activity and, you

5:05

know, his looks terrible,

5:08

but they said, look at this though. They

5:10

put that he was on the camera, the video and

5:13

they said, but look, he's having a big seizure

5:15

right now. And look at him. He's talking.

5:18

He's putting together a Lego. He

5:21

somehow is adapting to all these

5:23

seizures. So that was just

5:26

a blessing right there. And

5:29

I just thought to myself, I have

5:31

to change my outlook to

5:33

help everybody around me. The way we're

5:35

living and we've lived this last year.

5:38

is we can't do this any longer.

5:40

So we are going to find joy

5:42

in every minute of everything

5:44

we do from now on. We are not

5:46

going to let this epilepsy diagnosis stop

5:48

us. We are going to live for

5:51

the moment. We're not going to dwell

5:53

on yesterday or think about tomorrow. We

5:55

are going to dwell on the times that we have

5:57

with Luke where he's seizure free. I got involved

5:59

in his treating hospital. We

6:02

started doing some volunteer work.

6:04

So I kind of found my community at the age

6:06

of 12. He was diagnosed with Lennox Gastaut

6:08

syndrome, LGS. And

6:11

LGS is a severe form of epilepsy

6:14

where you have many different seizure types

6:16

that are very difficult to control.

6:18

So he's 16 now. Cognitively

6:21

he acts like he's about seven. He lost

6:23

a lot of years. We were talking about a corpus

6:25

callosotomy where they divide the brain to

6:27

stop those seizures and actually

6:30

I had done a lot of research on the deep brain stimulator

6:33

and they were putting these in patients

6:35

18 and older at the time for generalized

6:37

epilepsy. And Luke was actually

6:40

the first or second in the U. S. a

6:42

pediatric patient to get a deep brain

6:44

stimulator for generalized

6:47

epilepsy. It's been a little about two and a half years.

6:50

It has been amazing. It has decreased

6:52

his seizures by over 50%. Just

6:55

letting Luke live his best life after

6:57

everything he's been through. All these

6:59

years just, you know, means the world to us.

7:01

So, so when we can get involved with,

7:04

you know, with different organizations, like a

7:06

kid again, and we can do some fun things for

7:08

him, it just, it makes all the difference

7:10

in the world.

7:11

I'm so glad that the

7:13

most recent procedure that you tried worked, you

7:15

know, Kyler, my son has

7:17

epilepsy, which we knew

7:20

that he was going to have. We chose to

7:22

treat his medical condition, which

7:24

is brain AVM. And

7:26

he was having seizures for a while. And

7:28

they said the words intractable epilepsy,

7:31

the doctor was like, I'm going to try this one thing,

7:33

but if it doesn't work, you know, and

7:35

knock on wood, he's been seizure free

7:37

now for a little over three months,

7:40

but it's, it's, it's such a

7:42

roller coaster, you know, up and down.

7:44

So tell me, how did you get involved

7:46

with a kid again? So

7:48

basically I just. I mean, I'm

7:50

on a lot of Facebook with different organizations

7:53

and everything. And it was actually a LGS, Lennox

7:55

Gusteau Syndrome page, Facebook page. I

7:57

really read through it and I was like, Oh my goodness,

8:00

I think this would be, you know, a great organization.

8:02

I loved everything they stood for and how

8:04

they involved the family. Went on the

8:06

website and signed up and it's very

8:09

easy to sign up. And so that's, that's

8:11

always a plus to a mom of a complex

8:13

child. How easy is this going to be to do?

8:16

Because it's like, we don't have a lot of time. So.

8:18

Yeah, that's how we kind of got involved.

8:20

That's wonderful. I think a lot of People

8:23

don't understand what it's like to live

8:25

with a medically complex kiddo, you

8:27

know, and I think every time I hear the doctors

8:29

tell me, well, your kid is medically complex.

8:31

I just want to roll my eyes and be like, think,

8:33

I don't know. So

8:36

Kathy, tell me a kid again, seems

8:38

like a fantastic organization.

8:41

Can you tell me a little bit about how you got

8:43

started?

8:43

I'd love to. Sure. We've been

8:45

around since 1995. And. I

8:48

helped start the organization because

8:50

our oldest son, Christopher had an inoperable

8:53

brain tumor on the brainstem. And

8:55

while we were going through what you guys

8:57

are going through, realized how blessed

9:00

we were to be surrounded by so much

9:02

love and support, Christopher passed

9:04

away, unfortunately, from having gone

9:06

through. The experience

9:08

I realized I needed to do something

9:11

to help other families started again

9:14

and off we went. We started here in

9:16

Columbus, Ohio with our first adventure

9:19

and for those that don't know adventures

9:21

is what we call our advent. Events

9:23

that we do for the families and

9:25

an adventure is a cost free care,

9:27

free fun experience for the entire

9:30

immediate family to come to. So siblings

9:32

are included in everything that we do

9:34

because we recognize the sacrifices

9:37

that they are making when a child is diagnosed

9:39

with a life threatening condition. So they

9:41

are included in everything we do and treated.

9:44

Equally to the diagnosed child.

9:46

So we try to think of everything so that when you come

9:48

to an adventure, you don't have to

9:50

think of anything. It's a, a fun

9:52

filled day with your family,

9:55

as well as with other families. You

9:57

become a support system for one another.

9:59

And a couple of years ago, we decided

10:01

to take this organization nationally.

10:04

And so we started in Texas, as well

10:06

as a few other areas and a

10:08

very excited about. How we

10:10

are growing. It's so exciting and

10:12

I think it's, it's very needed. My daughter

10:15

Rylan is a senior in

10:17

high school this year and she is

10:19

going through the college essays. And

10:21

of course, a lot of her essays

10:23

are based on growing up with

10:25

a brother with a life threatening medical

10:28

condition. And I just absolutely

10:30

love that a kid, again,

10:32

brings in that sibling aspect and kind

10:34

of is like a whole family. experience

10:38

together. So who is eligible

10:40

to enroll? You said it was up

10:42

to age 20, right? Yes, up

10:44

to age

10:45

20. The application is on our website.

10:47

Any family that has a child with a life threatening

10:50

condition. So there's a wide variety

10:52

of not so fun diagnoses out

10:54

there. We ask on the application what the diagnosis

10:57

is. And a lot of them are auto qualified.

11:00

If we have any questions as to

11:02

whether it is life threatening or not, we will

11:05

contact the family. And we have

11:07

a medical committee also that reviews some

11:09

of those applications.

11:11

And I will have the website

11:14

on this podcast under the comments,

11:16

but can you just go ahead and tell it for me real quick

11:18

for our listeners? Sure, it's

11:20

at kidagain. org. And there is

11:22

something about adventure. For Kyler's

11:25

Make A Wish, I mean, we said, What do you want?

11:27

And he said, you know, All I really

11:29

want is an adventure. And I think that's

11:31

because they get stuck in their room,

11:33

in their bed. So I think adventure and

11:35

doing something fun just makes a

11:38

big, big difference. And we try

11:40

to Have in our house. Okay,

11:42

if we have to go and have this treatment or have

11:44

this procedure or have this done It's kind of

11:47

like we got something that sucks And so we

11:49

try to do something that really doesn't suck that

11:51

they can look forward to but a lot of times

11:53

for medical Families

11:55

that's hard because all of

11:57

our times go to the go to the medical

11:59

or the parking garage You know every time

12:02

we go I know Kathy that you

12:04

must rely a lot on community

12:06

support How can people get involved

12:08

with a kid again? Oh,

12:09

we absolutely do. We would not

12:12

exist without the support

12:15

we get from volunteers.

12:18

I always say they're the backbone of our organization,

12:21

would love to have more volunteers.

12:23

We would not exist without some very

12:26

kind hearted people and always need

12:28

more because the amount of families we are serving

12:30

is growing so fast. And

12:33

you know, if anybody out there is, is a

12:36

owns a business or something that

12:38

might be a nice place to have an adventure,

12:40

would love to hear from them as well. And

12:43

all of that can be done on our

12:44

website. Fabulous. And I, yeah, I just want to

12:46

stress again, even the smallest adventure

12:49

can make the biggest difference.

12:51

Anything I think is a huge

12:53

adventure for, for some kids, especially

12:55

when they, they. Get left

12:58

out of so many regular

13:00

activities. And I think it's hard for parents to

13:02

see kids, you know, they see their, you

13:04

know, friends or the kids who are their age

13:06

going and doing these things that they know will never

13:09

be an option. And that's just another

13:11

reason why a kid again is so amazing because

13:13

it gives them experiences that

13:15

they would not otherwise have. We're

13:17

on all

13:18

the handles where Facebook. huge

13:20

on Facebook. We even have private

13:22

Facebook groups for our family

13:25

so they can talk to one another and

13:27

exchange ideas and everything

13:29

on there.

13:29

The community aspect, which Amy talked about

13:31

a little bit as well, is a big thing, especially

13:34

with AVM Alliance. That's something that we

13:36

do too for our aneurysm, AVM,

13:39

and stroke community, you know,

13:41

hemorrhagic and ischemic. And

13:43

it's. easy sometimes when you're

13:45

down in the thick of it to

13:47

forget that you're not the

13:49

only one going through what you're

13:51

going through. And it's so easy

13:54

to get lost. And so to have

13:56

a connection of other people,

13:58

even if it's not the same medical condition,

14:01

you can learn from each other. You can

14:03

gain strength from each other advice,

14:05

you know, never underestimate the

14:07

power of community just

14:10

for mental health. just

14:11

that sense of community. You know, it's so important

14:13

for me and our family. But when I look at

14:15

Luke and he's looking around at other kids

14:18

and seeing their, you know,

14:20

the challenges they have and everything,

14:22

I just think it helps so, so much. So

14:25

it's been amazing for us. And yeah,

14:27

we're just, we just really, really

14:29

blessed to be a part of this.

14:31

Well, Amy and Kathy, Kathy, I agree

14:33

wholeheartedly. Thank you so much for all you

14:35

do for our kids because it does

14:37

mean the world and it makes the biggest

14:39

difference ever. And these memories, each

14:41

one is like more precious than gold. I'm

14:43

just being completely honest about it. Right

14:45

now, AVM Alliance is working to send

14:47

out stuffies, stuffed animals. And

14:50

so you know, this last week we sent

14:52

out 115 stuffies

14:55

and the parents have sent us. back,

14:57

you know, pictures of the kids, you know,

14:59

opening them up and I'm so happy.

15:02

And I get messages about stuff. He's

15:04

going to therapy and stuffies, you know,

15:06

snuggling while they have to take their shot. I hope

15:08

that our listening community knows

15:11

what a difference it makes, like even the littlest

15:13

thing, because I think that people who don't

15:15

have medically challenged kids don't understand

15:18

the power of a Lego or

15:20

the power of a stuffy or the power

15:23

of a card. I mean, it really can just

15:25

be. Anything, but

15:27

it can take a kid from like the lowest

15:30

low to, you know,

15:32

back to normal level of, you

15:34

know, I'm cared about, especially because,

15:36

you know, mom and dad say that they care. Right.

15:39

But that doesn't count. And it's like,

15:41

I don't know why it doesn't count, but I'm just telling

15:43

you as a kid,

15:45

mom and dad caring doesn't matter, but

15:49

having, having the, having somebody

15:51

else. That thought of you, even if it's

15:53

somebody that you don't even know is like,

15:55

wow, that means I, I actually

15:57

really may be special. You know, you, you

15:59

actually do want me to get better. And

16:01

that motivation for improvement

16:04

and recovery and therapy, it just makes all

16:06

the difference. So thank you

16:08

guys. Thank you so much for joining us today.

16:11

Thank you so much for having us.

16:14

The focus of this month's Things

16:16

to Think About is based on the children's

16:18

book, Or So They Thought, written

16:21

by pediatric hemorrhagic stroke

16:23

survivor Marina Ganetsky.

16:26

When a child suffers a stroke, their life

16:28

changes in an instant. They not

16:30

only have to relearn how to make

16:32

their bodies work, they often lose

16:35

their pre stroke friends. Having

16:37

to lose your body working like it always

16:39

had is hard. But losing

16:41

your support network of friends? Especially

16:44

when a child is going through something that changes

16:46

their life dramatically. is

16:49

even harder. Marina's

16:51

inspiring book illustrates

16:53

the struggle, hope, and extraordinary

16:56

resilience of children who have suffered

16:58

a stroke. She reminds us what

17:00

it is like for a child who has suffered

17:02

a life altering medical illness,

17:05

and her book reminds children to show

17:07

love for their friends, stressing

17:09

the need for inclusivity. We

17:11

all need each other. Thank

17:14

you, Marina, for reminding us

17:16

of this valuable life lesson.

17:22

And as always, if you have questions, have

17:25

a topic you would like to hear about, don't be

17:27

shy. Share it in the comments and

17:29

let us know. And if you liked what you heard

17:31

today, please go online and

17:33

rate this podcast. Remember,

17:35

you're never walking this journey alone. Take

17:38

care, y'all.