♪ Always be strong ♪ - She was determined.

Determined to live.

- She was cancer free.

(uplifting music) - I feel like I was in really good hands, and I can't say enough about the treatment that I got.

- Things do change, nothing stays static.

A new day will come.

(uplifting music) - Welcome to "Hope is Here," I'm Carla Hill.

Being a child means endless hours playing outdoors with friends.

However, there are some children who never get to fully participate in recreation.

For instance, children who are ventilator dependent are limited in their activities, and enjoying childhood to the fullest is not often realized.

Yet, there is this camp.

One very special place where children dependent on ventilators once a year go to the beach, float in the pool, and enjoy just being a kid without restriction and fear.

These campers enjoy the best week of their year being supported by a well-known children's hospital, and trained volunteers who make childhood dreams come true.

This is the story of VACC Camp.

(upbeat guitar music) - VACC Camp actually started, Dr. Moises Simpster, he was a pediatric pulmonologist, and he actually had the vision of these children that have tracheostomies or are dependent on mechanical ventilation equipment, said, "They actually can have a normal life."

He was the first person in the United States to send a child on mechanical ventilation home.

(crowd cheering) And he was able to go home on this equipment.

And that happened many, many years ago.

And he said "Well, why cannot have a normal life?"

So he envisioned to start a very small camp.

Well he decided, "Okay, let's do things that they can do.

Let's start thinking like games and people getting familiar with them, they feel comfortable."

- Yes?

Many years ago when my children went to camp I decided to give an opportunity to children who were prisoners, that is your word, on the hospital.

Then when we start sending patients, technology dependent home, they were prisoners in their houses.

They hardly went out.

So my idea was to bring these children to the mainstream.

(bright music) - [Dr. Franco] And that's where it started.

It started very, very few children and families.

For five or six, surrounded by pulmonologists and the nursing, and everybody helped them to have a normal life.

And it became a whole week.

(group cheers) - VACC Camp!

- Whoo-whoo!

- VACC Camp!

- Whoo-whoo!

- Where's the party at?

- Right here, right now!

- Where's the party at?

- Right here, right now!

- VACC Camp!

- Whoo-whoo!

- VACC Camp!

- Whoo-whoo!

- Where's the party at?

- Right here, right now!

- Where's the party at?

- Right here, right now!

(group cheers and applauds) (uplifting guitar music) (waves crash) - And then it was opened up to the United States.

So we started having children from New York, Chicago, Georgia, other places because it was the first camp of that nature in the United States.

So the vision of Dr. Simpster was the first of many things.

Let's first, sending the patient home, second making their normal life.

- VACC Camp!

- Whoo-whoo!

- VACC Camp!

- Whoo-whoo!

- Where's the party at?

- Right here, right now!

- Where's the party at?

- Right here, right now!

(group cheers and applauds) - [Dr. Franco] And now we have a camp that they can, they enjoy it.

We have children that they said, "In my own home, they look me different.

Here, I feel like the same person, like anybody else.

I can do everything I want."

(group cheers) And it's not only for the children with have the problem, the volunteers.

It's the first, volunteers are teenagers, school teenagers.

And they are the first time actually with a child that has certain disabilities.

And for them to see their courage, their strength, they love it.

Since then we have children that go, all these patients become actually physicians, nurse practitioners, respiratory therapists, nurses.

They enjoy it so much.

And they said, "I wanna do the same, I wanna be part of it.

And I wanna be part of it, as in the medical point."

So I believe, and the vision was bigger than just one child with a disability.

It was a family, siblings, and the volunteers.

And it is, what does it make it?

Since 1986, we have 37 years just doing this camp.

(uplifting guitar music) - [Supervisor] Excited for this year?

- Yeah.

- You are?

(wind blows) - Where's the party at?

- [Crowd] Right here, right now!

- VACC Camp!

- Whoo-whoo!

- That feeling, that sensation that they give you, that joy is unbelievable.

And that's the reason you keep doing it.

(uplifting guitar music) - What an amazing place.

We are so lucky to have joining us two families who enjoy this VACC Camp experience every year.

I want to introduce in studio, Sheila and Mateo Gonzalez.

And at home, Paola, Andrew and his sister, Isabella Nagle.

Welcome to the show, everyone.

- Thank you.

- Thank you for everything.

- Thank you for having us.

- Yes, of course.

- Say thank you.

- Thank you.

- This show... - Thank you for (indistinct).

- You're very welcome.

This show's really special.

So I'm gonna start with Sheila and Mateo.

How did you find out about VACC Camp?

- Okay, when we visited the hospital pulmonologist they invited us 'cause it's a program from the hospital, from Nicklaus Children.

So one of the founders, so that was Mateo's doctor, Dr. Simpster, he invited us and he told us to- - Dr. Simpster.

- Dr. Simpster.

- That's right.

- So he invited us to the camp and then everything started.

- And how long have you been going?

- We have been going for 11 years.

- Oh, eleven?

- 11 years.

- 11 years.

- Well, I want to bring in the Nagle family.

Andrew, you are 13, and I understand you've been going to VACC Camp for around 10 years, is that right?

- Yes, that's very true.

- And is VACC Camp as special to you as it is to Mateo?

- Yeah.

It's like super amazing with the VACC Camp.

Like amazing.

- Good to hear.

So Paola, why is VACC Camp so special to you?

- To me, to see my, the happy in my kids.

They are so happy every time over there.

And to be and to see Andrew how enjoying and he can be himself over there.

No worry about his getting sick, be and (indistinct) and I have help over there.

Like his doctors and the volunteers, they are amazing with them.

They make him feel like himself.

He can joke them and joke too much.

- So Isabella, this question is for you.

I understand that you go to camp as well.

Now, how does that work?

- It works because I go with my brother and it's a very fun experience for me.

Like my mom and Andrew said, I get to experience new friends and people like, and Andrew with my age and Andrew's age, well, since we're twins.

(chuckles) Yeah, and it's super fun.

And there's things that Andrew has never done.

And so it's like an opportunity for him to experience as a normal teenager.

- Paola, I wanna come back to you and ask you why is this so important for Andrew?

When you see him once a year surrounded by these campers, how does that make you feel, why is this so important?

- Well, he's no, he no had the friends.

He is always here at home.

And then when he go over there, he is so happy that the, that for me is the payback.

(chuckles) There is seven days, they doing a lot of things.

They doing a lot of things and we get tired and everything.

But it's special because to see his face to enjoy every day by day and hour, he never get tired.

We had to force into him to rest because, you know he had only one lung and he get tired so easy.

But he don't get tired over there.

He keep on going, he force himself, he wanna be there.

And to see him happy is what made me more happy.

- [Carla] That's amazing.. - And like that, he is... And everything to him to develop him, like Isabella say, the teenagers and other kids like he never had.

- Paola, tell me about Andrew's day, you talked about this is really an important time of year for him.

Is Andrew at home most of the time?

- Yes ma'am.

He had a online class.

He attending all day long and he's here with the nurse.

He had a nurse 12 by 7.

And thank God we always is, pero he's always here.

We're taking sometimes when, you know, over the weekends or if we going to the pool or something outside when he's feel good.

But most of the time he's here by himself with the nurse.

- Sheila, you mentioned Dr. Simpster, the visionary of VACC Camp.

Can you tell us a little bit about him?

What do you, what was he like?

- Dr. Simpster was an angel alive.

I mean, now he's on heaven, but since we met him...

I met him when Mateo was very sick.

I mean when he was first diagnosed and everything.

And he gave me that calm, trying to say, "Everything will be fine, everything is gonna be fine," you know?

"Nothing is forever."

And after that, Mateo got better.

And when we started going to camp, I could not imagine all the happiness in the camp.

I mean they wear their ventilators, they wear all those machines.

Andrew and Mateo, they're able to talk.

They're able to be without the ventilator when they are good, you know?

But many of the kids, they are not.

They are vent-dependent 24 hours.

But they depend on the, my son for example, they depend on the ventilator only when he sleeps or when he's sick.

But all these kids are so happy, and see all the energy that Dr. Simpster used to have for the camp was, I mean not many people in the world, you know, could do that for this.

'Cause he gave his life for the camp, his life totally.

(whistle trills) (low chatter) (volunteer laughs) - Okay.

- Ooh, ready for a little shock.

(group cheers) - I enjoy to be with you for VACC Camp it's because it's a big opportunity for all of us as people and human beings to get better.

(group cheers) - Andrew, do you remember the first time you were able to get in the water or what are your memories of it now?

- I guess when I, you know, I do not remember anything.

But you know, the first time I went in the water, the volunteers and with everyone it was amazing.

- And Sheila, tell us about VACC Camp.

How is it different from any other camp that maybe you looked into or that other people experience?

(Mateo whispers) - Okay, the first thing is, all the kids have a tracheostomy.

All the kids have medical issues but that doesn't means that they can't have fun during the camp.

- Where's the party at?

- Right here, right now!

- VACC Camp!

- Whoo-whoo!

- VACC Camp!

- Whoo-whoo!

(winds blows) (staff chat faintly) - [Group] Right here, right now!

(camp members cheer) - All the volunteers, they work super hard for the kids to make them feel happy and do everything.

So all the volunteers, there's nurses, doctors, the respiratory therapist, and the young teenagers that come too, play a very important role to play with the kids and make them.

So this camp, there is no other in Miami.

Even you pay or no pay, there is not another like this where kids could be the kids even they have medical issues they could, you know, enjoy life, go to pool, play with the other kids, have animals around, do this, do that.

That's, I mean even all the medical issues that they have that I know that is not simple, they could enjoy life like other kids.

- And Sheila, similar to Paola, what was it like when you first saw Mateo doing these things that you never thought would be possible?

- It's funny because the year before, we were living in New York so the first time we came to Miami.

When we were in New York, the doctor told me, "Listen, keep away, you're going to Florida, keep away from the beach, keep away from the pools.

Mateo won't be able to enjoy those things, That's very dangerous for Mateo."

But when we met Dr. Simpster, he said, "What, what are you talking about?

He's gonna go to the water and he's gonna do all the things that other kids do.

You will see, that's safe.

Nothing has happened, ever, so he will be fine."

So when we went to the beach, there were plenty of fire rescues, all the nurses, everybody ready in case something happened.

But thank God, up to today after the all these 10 years, 11 years, never anything had happened.

And he has played with the fire rescue people, with everybody, the volunteers, and all the kids, and thank God nothing has happened.

But that was our reality.

- I have- Sorry.

- Mateo, I was gonna ask you, what is the experience of camp like for you?

- Fun, exciting, mind blowing.

And well, yeah.

- What's your favorite thing about camp?

- Well, like games, spending the time Andrew, my favorite friend.

And I say, well that's you.

- Your favorite friend, I love that!

Oh.

Isabella, how are you supporting your brother when he's there at home?

- I support him by telling him, "You've got this.

Just because you're at home doesn't mean that you're not, you can't experience the things that normal teenagers do."

Like when we go out to eat or to like go play, go to an arcade for example.

I tell him it doesn't matter that you have the trach, as long as you have fun and you see yourself as a normal teenager, you will have the most wonderful experience ever.

- And Isabella, one more question.

What is it like when you see your brother at camp?

- I feel really proud of him and I see him, that he's making new friends and I sometimes get emotional because I, 'cause my mom always, my mom told me once that, "I don't know he'll experience the things that I do."

But when I saw him first at camp, not when I was little like when I started to get older, I saw him, he was having more fun and like a normal teenager.

- So here's a question for all of you.

What happened over Covid?

So Sheila, tell me what that was like when Covid hit.

- (sigh) That was sad because for us was closed doors and don't go anywhere because these kids they got seriously sick when they got sick.

I mean a cold could be something serious, he could go out to the hospital for that.

Imagine for the Covid.

So for us it was two years with the doors, windows, and everything closed.

Nobody entrance, nobody goes out.

Period.

For us it was like that, so no camp.

We tried to do something through internet, through Zoom with the volunteers, some of the volunteers, the leaders.

And that was very nice of them.

But we were not able to out at all.

- Paola, what about you?

When Covid hit, what was that like for your family and then what was it like to finally come back?

- Well for me it was very scary because you know Andrew had a chronic lung disease when it's a respiratory problem, and that wasn't a respiratory virus.

And I was very scary.

But thank God, everything went well.

He never gets sick.

And what is respect to the VACC Camp, we were very upset because you know, we no have nothing to do for that week for the spring break.

Because you know we no have either the money to go anywhere.

And we always come with that week to have fun, to enjoy that week, the spring break.

And then, well I try to do my best here to put in a pool in my backyard.

(chuckles) And then we all enjoy every day, we'll take care very much when we just the time after the spring break, the other people, they are organized.

They come, they call us, Bella call us to tell us that they gonna do some activities through the Zoom.

And that was awesome because they were so happy to see her friends.

Even there was no person in-person but I was in the Zoom, and they were so happy.

- Paola, you touched on it just a little bit.

I wanna ask you and Sheila, how important are the volunteers at VACC Camp to you and your family?

- Oh my God.

The kids, they had a big heart!

The kids, what they select for each high school here, they say they are, it's for, give it their volunteer hours.

But I think they give it everything.

How we go to the camps, they no leave Andrew one minute or one of the campers.

They play everything with them.

And even through the year, they talk with them, they call to ask them how they're feeling, they remember their birthday.

They even come over here to their house and they're giving a surprise for his birthday.

'Cause the kids, they are very important and they help him to his develop.

And he's to be in a normal kid.

They treat him like a normal kid and that's very important.

They had a big heart, they are very good kids.

- Tell me your experience with the volunteers.

- Okay, we have like different volunteers.

We have the teenagers, and I would say what Dr. Simpster said, we have the cream.

Because they were the cream of the high school teenagers.

They were very special.

I mean, as Paula said, they go for volunteer hours.

But after that, after the camp you said, it's not volunteer hours because they give everything.

They spent 10 or 12 hours daily in the camp.

And they never tired.

They are always happy, they are always with a smile.

No matter if they are tired or not, they are always with a smile.

So these kids, they are special.

These teenagers are, I mean, they are the cream.

- [Volunteer #1] Something, you know how we got ear piercings last year?

- Yeah!

- [Volunteer #1] We gotta do something cool like- - Let's go.

- All right.

- [Volunteer #2] VIP.

(group chuckles) (group cheers and applauds) - One last thought from Dr. Franco about what her thoughts are on camp and what she'd like the public to know about VACC Camp.

- So a couple of things that they, things that people don't know that this camp, first of all, is 100% for free.

So this is driven by obviously donations, I mean the same families, other families, or other people who realize.

And so that is, it's critical because it takes time and money of course.

But also I want them to know that even is it for free, this is for anybody who can actually come to see us.

I would love to see other people to realize that you can do it.

Other families, they might not even know that we exist and this type of camp exists and the things that we do.

Because we want them to come, we want them to enjoy this because we have seen the change in these children's lives.

When they come for the first time, they come out of their bubble.

We had children that have been severely depressed and the families make the effort to come, and after that they change their life.

They felt for the first time that they were doing a normal life.

And they actually dealt with other teenagers or children their age in a way, or at least teenagers, they said, "Oh, you know what, they do understand what we're going through."

And they became friends.

So that made a difference.

I think families don't know how much difference it is until they actually try it.

And we are not only here for the children in Florida, we are here for the whole United States.

And actually sometimes we have, some people from other countries have come.

And, because they realize and they found out that it exists and they come and they love it and they try to come every year.

So that's what we believe that it makes a difference because if your child has not ever experienced something like this, and first time you do it, you would like to come back.

- So for both of the moms, and I'll start with you Sheila.

VACC Camp is designed for very special children like Mateo, like Andrew.

But how does it help parents during that week?

- That week is amazing 'cause we can talk with other parents.

We have, you know, 'cause the volunteers, Mateo is part of the volunteers and we don't take care of the kids for that week.

You know, the nurses, and the volunteers, the teenagers, they're the ones who take care of the kids.

And then the parents like Paola, me, all of that, we talk, we play, we smile, we have fun, we talk to the doctors, we have lunch together, we have dinner together.

So for us it's a blast.

It's like, you know, it's our week too.

- Paola, how do you feel about the week for you as a parent?

- For me, I get tired.

(chuckles) It's very enjoyable, I love it.

I love it because it is, you know like I can tell you is, to see these two happy, made me more happy.

This I know I enjoy more in them because you know, like let's say we get togethers with all the parents that are coming from different places because they're coming for out of the state, from out of the country.

And then we have time to talk with other, to know each others, to talk about them, about their kids, how they improve, how they are doing.

And then for us, it's, I talk a lot (chuckles) and I get tired to talk (chuckles) because it's, I talk with everybody and we going along so well.

Either with the doctors, with the, like I say, let's say with all the volunteers and everybody because we're a family.

The VACC Camp is a family.

It's so sad when somebody left, like you know, when they turn 21, they leave.

And we are so sad that day because they leave, because we being every year to thinking about this camp and we enjoy it and you know, you get, all this family they get part of your family too.

- So Andrew, let me know, are you counting down to next year's camp?

- Yes, I, yes.

- What about you, Mateo?

- I agree, yes.

- [Carla] You're looking forward to next year's camp?

- Yep.

- It sounds like a lot of fun.

Thank you for sharing your beautiful stories about, as I said earlier, one of the happiest places on earth.

It sounds like Andrew and Mateo agree with that.

And we can see from their faces that this is certainly true.

You've described hope and happiness all bundled up in an event that takes place once a year for a group of some very special children and young adults.

Thank you again for joining us.

(uplifting music)