Cami Grundy, a life with Prader-Willi Syndrome

LARRY GRUNDY: [MUSIC] Cami is an absolute joy when she's on. She's engaging.

She's playful. She's fun.

She has a great sense of humor.

She is very thoughtful,

caring, really great with people that are older and younger children.

Sometimes you even forget that she has a syndrome when she's in those moments.

Prader-Willi syndrome is a genetic disorder involving the fifteenth chromosome.

A child is born with it, and it is a lifelong syndrome.

As of right now, there is no cure.

There's behavioral issues.

There's learning disabilities, delays, and a lot of things,

but the main thing that Prader-Willi syndrome is known for is an insatiable appetite.

Somebody with this syndrome cannot control their hunger feelings,

and if left to their own

desires, they will basically eat themselves to death.

CAMI GRUNDY: YEAH.

CAMI: Nope, too much.

LARRY: A little too much?

CAMI: Yup!

LARRY: I get it.

KIMBERLY GRUNDY: Cami's nickname is the Stealth Ninja.

CAMI: No, still too much.

LARRY: Little too much?

CAMI: Yup, still.

KIMBERLY: It's because she can walk around so very quietly, and she is very fast.

She'll grab food very quickly.

LARRY: Twelve.

CAMI: No, it's not. It's at the fourteen. It is.

LARRY: Oh, ok.

CAMI: If I am in the kitchen, I'm very fast.

LARRY: Very fast how? What will you do?

CAMI: I would take something out of

the kitchen. Or I would

would bring it into my room or even if my mom was out here in the dining room,

I would bring it into my room.

Anything like that my mom and dad have to watch out for.

LARRY: The way that I like to explain the hunger for somebody with Prader-Willi syndrome is

imagining striking

your thumb with a hammer and then telling yourself not to feel any pain.

It's virtually impossible—

CAMI: Yeah.

LARRY: And so it's impossible for somebody with

Prader-Willi Syndrome—

CAMI: It really is.

LARRY: To not seek after food and to eat it when—

CAMI: Yeah.

LARRY: it's there.

KIMBERLY: Obviously, we have a lock on the kitchen door that you have to put

a code in because if it's a key locker, she'll get into it.

We have the house alarm. [BEEP]

It's just specifically for the front door and the back door because

she'll leave the house and try to get food outside or come in a different way to do that.

We always have to check the locks at night,

make sure we set the alarm.

[LONG BEEP]

ALARM SYSTEM: Disarmed. Checking the room.

KIMBERLY: Having a child with Prader-Willi syndrome is amazingly difficult and complicated.

I have a beautiful girl who has challenged me in great ways,

ways that I never could have done without her.

Opened me up to a whole new world of understanding and understanding people and emotions.

CAMI: Thank you, Daddy.

LARRY: You're welcome, sweetie.

Somebody with Prader-Willi syndrome is requiring their network,

their support, to provide the 100% food security.

There are times where we fail her in that, where something's either

left unlocked or the kitchen or food is

left out, and it's not because

we're bad parents. It's just life gets in the way, and you forget.

When she gets that added calories and the food that's outside of her regular diet,

it's a great feeling of remorse

and guilt that comes across us because it's not her fault.

We're the ones that failed her.

She can't control it, and it never is her fault.

It's always our fault, and so when that happens

it's emotionally draining, it's exhausting,

and it actually makes me pretty sad.

You want your best for your kids,

and you realize in life that you can't take everything away that they have to experience.

You can only try to help see them through it and do the best

that you can as a parent and as a human being.

When I fail her in those ways of not having food security,

I feel like I failed her as a dad,

and I just want to be able to take the syndrome away from her.

[CAMI LAUGHS]

LARRY: We make up jingles.

CAMI: Yeah, we make up jingles.

LARRY: We sing songs together?

CAMI: Yeah, the jingles we make up is [OVERLAPPING]

LARRY AND CAMI: You're my sweet, [SINGING] tweet, queen of the beat. You're my sweet, tweet queen of the beat. [LAUGHTER]

CAMI: And then [UNINTELLIGIBLE SINGING]

LARRY AND CAMI: [SINGING] Praying oh Lord oh keep me awake. [MUSIC]

LARRY: Good job.