♪ You are my sunshine ♪
♪ My only sunshine ♪
(Adelaide cooing)
Yeah?
- I'm gonna try and make you feel better, hmm?
Yeah, may I lay with you for a little bit?
(Adelaide screaming)
Hey, I hear you.
I hear you, I do.
Every single day, we live in a life
or death circumstance with our daughter.
Tomorrow is not guaranteed.
I will scream our story from the mountain top
so that our daughter's journey has not been in vain.
That all makes it worth it.
(somber music)
Adelady, you're supposed to be sleeping.
Why aren't you sleeping, mama?
No, no hiding.
Adelaide was seven months old
when she had her first seizure.
That was also the time
that Miguel was auditioning for "Hamilton,"
so our emotions were all over the place.
We're getting this information about our daughter
that is totally overwhelming, and then on the flip side,
Miguel is going in for, arguably,
the biggest musical to ever happen
in the history of Broadway.
- ♪ It's time to take a shot ♪
♪ Time to take a shot ♪
♪ I'm not throwing away my ♪
♪ Not throwing away my shot! ♪
- My daughter is sick
and we don't understand what's going on.
So that's happening in my brain
at the same time as the biggest audition
in the history of my life.
I got the job and began a crazy transition in our life
but it all feels very squished up into one experience
of being terrified for my daughter
and being excited for myself.
It was so unbelievable that this was actually happening.
And I would leave the theater and sign all the autographs
and jump in a car and come home,
and ask how many seizures we had.
On stage, it's never very far from my brain.
- Are you feeling better than before?
Your brother is gonna be home soon.
Think he's gonna wanna come in and give you some snuggles.
Yeah? We can get some cuddles in?
Hi, how are you?
How was school? - It's so hot!
- It is so hot.
Jackson is our rockstar.
He can acclimate to almost any situation.
He is one of the most friendly people I have ever met
and absolutely has more empathy, though,
than any human being I have ever come across.
He loves to sing and dance and play Minecraft
and do all sorts of other, normal seven year old kid things.
(guitar playing)
Okay. (laughing)
Did you just get love attacked?
Did you get love attacked?
I think you did.
All right, let's try taking you out.
We can see how you do now that you're nice and calm, okay?
- Jackson was always excited about having a baby sister.
So when she came, he was over the moon.
He smothers her with cuddles and hugs and kisses.
He enjoys caring for her.
You know, her machine was going off,
Jackson would go check on her.
If she was having a seizure, he would start to sing.
He is the best big brother any kid would ever want.
- [Kelly] He just loved her,
and has always accepted her for who she is.
It's really a special gift.
(humming) Here she comes!
Is daddy gonna sing?
- Wait, wait, here we go.
(strumming guitar)
Then the next part.
- Adelaide's condition can be very challenging
to explain it to a layperson
when the doctors who are treating her
barely understand what is going on.
We have done nearly every test available
and have moved on to research studies
and still, no one can tell us what the root cause is.
(somber guitar playing)
We are fighting for science to catch up to her.
There is no cure for epilepsy.
- [Miguel] Uh oh, she really down?
- [Kelly] Oh, this is not, no, this--
- [Miguel] Open it.
- [Kelly] I think it needs to be opened.
(machine humming)
(air escaping)
Big breath, that's better, isn't it?
Now you're good.
She's like, "I'm just trying to keep it exciting, guys."
That's better.
That's better breathing.
Sometimes she'll have seizures overnight,
sometimes she'll just wake up screaming
and there's nothing we can do to comfort her.
Many nights, she'll have issues breathing.
Her oxygen levels will go down
and her alarms will start to go off and we've gotta try
and get Adelaide's oxygen numbers back up.
I've had to resuscitate her
on more occasions than I care to remember.
And then, two nights a week, we have a night nurse,
and I try and not listen to the alarms going off
and try and sleep through it.
Sometimes it's harder than others
and I end up in her room anyway.
Up, up, up, up,
- Oh yeah, big breath, big.
It's a very complex emotional journey
to find out that your child is sick.
Pediatrician says she's not meeting her milestones
and there are lots of different reasons that could happen
from the worst of the worst
to just a passing thing that will get better.
So we're thinking that this will pass.
We're gonna go to the doctor and they will make this better.
And that's, I think, every parent's hope,
when you're starting a journey like this with a sick kid.
- [Nurse] Good girl, that's good with your head, baby girl.
That's strong. - Hey Adelaide baby.
Adelaide!
Good job.
All of the automatic systems in your body,
your heart rate, breathing, your temperature control,
everything that you don't have to think about
that your body just does for you,
Adelaide's body doesn't control that well.
They will decide that they're going to have
an allergic reaction to a smell or a food,
even though she has eaten it every day for her entire life.
And so we are constantly trying to figure out
what is going to trigger her mass cells.
- That's better, that's better.
- [Kelly] I think I just needed cuddles, Dad.
- There's a lot that goes in to a special needs environment
to grapple with all of the things,
of the machines and the medicines and stuff.
It did not take long to realize how much we needed help
and how much our lives would change when we got help.
- Through CURE, we have met an entire network of people
who understand the trials of this journey.
Perhaps even more importantly, we found fellow fighters,
an army of parents who will not give up
until a cure is found.
I was flying blind, walking in to a new city
with a disable daughter, and I didn't know where to turn.
So I reached out to CURE and asked for help.
Were there doctors they could recommend,
were there other families they could connect me with?
For the very first time, I felt like
I was speaking to someone who got it,
who understood what I was feeling.
I was immediately hooked on the organization,
and said, "What can we do, how can we help?"
- It feels like it gives this whole Hamilton thing
a deeper meaning, a deeper purpose.
If I can stand up on this Hamilton box
and point over at somebody else
doing some amazing work,
then that's a greater use of the platform.
- Adelaide's legacy is one of hope, of determination,
even amongst incredible circumstances.
We go about our advocacy through her example.
She is stronger than either of us could ever hope to be.
- If all of our pain, all of her struggles,
we don't achieve what we wanted,
perhaps some family that we'll never meet
will get what they want.
And that's a pretty great legacy to leave.
(music crescendo)
(Adelaide cooing)
- [Kelly] Yeah, come over here, come get me!
Come get me!
(reverberating piano music)