-: Bye, mommy. -: Bye, goin' up.
-: Aw, what's falling, mommy?
I'm here!
Steven and I have known each other since junior high school.
We didn't get married until we were 30, though.
It took us a long time to have Dominic
so by the time we had him we were 35.
I was in shock, but I was so happy. (laughs)
-: Yeah, you know, scared too
because it's the first time we were gonna be parents
and you never know how that's gonna go.
-: Hey Dominic, daddy's bringing
some of the Christmas decorations.
The pediatrician came in with a sheet saying,
"You know, we got something important to talk about.
Something came back on his newborn screening
for adrenoleukodystrophy."
At the time, that word, I'd never even heard
so I didn't really know what he said.
I heard a very long word.
This is what we have, and this is what Dominic has,
but everyone else has their own stuff.
(mellow guitar strumming)
That a boy.
-: It's a strange disease because there's no way
of telling how it's gonna manifest in future years.
Where do you wanna put the tray?
-: Right here!
-: We started researching it and reading about it
and the more we did, we were like,
"There's no way he has this."
-: All right, why don't you help me,
which one you wanna put there?
-: They test for two things.
They test his very long-chain fatty acids
to see that those are elevated
and then they do the genetic piece of it.
The geneticist called me up and told me,
"He's fine."
Who is that? Is that Rudolph?
At that point I was about halfway through my maternity
and I said, "Oh, you know finally I can relax now
and enjoy the second half of this."
And then about a week after that they called and said,
"We need to retest him."
-: I was on my lunch break. I called them
and they were like, "It's positive."
(sad string music)
I literally cried the whole way home from work.
I just kind of feel like that was a death sentence,
and there's nothing we can do,
and it was just a matter of time,
just trying to enjoy whatever moments you have left.
I remember pulling up to the park
and not even getting out of the car
and just watching them play
because I just knew, you know, once I told them
that from that point forward it was gonna be different.
-: We were getting ready to leave, and he was standing
in the parking lot, and I just took one look at him,
and I knew exactly why he was there.
It was a horrible day.
I didn't know what to expect at all,
and I just knew it was gonna be really, really bad.
I had kind of accepted that I'm just
not gonna be okay after this.
But I was wrong.
(smooches) Scratches?
We have a different life than my friends do, right,
when it comes to things, and
a lot of people that don't know this disease,
which is most people, they don't understand it.
A lot of times you get, "Well, he's doing fine!
You know, so like nothing really came of this,
that's great!"
Dominic has this disease,
it's just a matter of what's gonna happen.
(melancholy piano)
No, that doesn't go there!
Is that where it goes?
As scary as all of these things do sound,
finding out about it and stopping it
before it's too late is actually doable.
It needs to be very early, which is the whole point
of the newborn screening and why all the states
should be doing it, because there's a standard of care
and there's a protocol that keeps these people alive.
Ready to get goin'?
-: Yes!
-: He gets blood work every five months now.
That month leading up to it when you know you're going,
it gets nerve-wracking.
-: It's always in the back of your mind,
but you kind of put it aside.
We go to Boston and we love Boston,
so it's kind of like you're going on a trip,
but you can't enjoy it until after you have the test.
(echoing electronic music)
-: When he was an infant going for these,
in the back of my mind I was nervous,
but at the same time it was highly unlikely
they were gonna see anything on his brain scan
at that time 'cause he was still too young.
-: Dominic has adrenoleukodystrophy,
so every six months we have to monitor his brain.
-: As soon as you come to the room, he may be scared.
-: He's three and a half,
next time he goes he'll be almost four.
We are in the thick of it now.
This is when that cerebral onset really comes on.
-: Alright, come here, just up here.
(Dominic crying) Let me tell you a story.
-: I don't want to!
-: It's just terrifying,
please don't let them see a lesion on his scan
because I still don't wanna hear that news.
Nobody does.
This last time we were in the waiting room
for the appointment with the doctor,
and his nurse practitioner came out to the waiting room.
She just looked at me and I was like,
"Oh my gosh, that was not a good look."
Then she came back, she was like,
"He's running really behind."
Maybe that's why she gave me that weird look
'cause she knew I was gonna be waiting long.
Then she just looked at me and went,
"Everything's okay, though."
She was like, "I saw the scan, it's fine."
I was like... (sighs gratefully)
(upbeat guitar music)
-: It was kind of an eye opener
when we went to our first ALD Connect meeting,
there are actual people with ALD there.
-: Hi mommy!
-: No way, daddy does it! -: Yeah!
-: It's so important to have other people
that know what you're going through,
but I think it's also just very important,
I want Dominic to have these lifelong friends
and have people that are going through the same thing
that he's always gone through.
You know what, if he does get affected
by the disease later in life and has some
hardships because of it, I just want him
to be strong mentally and happy with himself
so that he'll be able to deal with that.
It's opened up my life, though, to things
that probably I never would have experienced before.
-: As tough as it is dealing with it,
we feel like we're one of the lucky ones.
-: We're a pretty normal family now
with a three-year-old.
-: Right, buddy?
(Dominic screams delightedly)
-: I got a big one! -: Blow it.
-: Put it on mommy's nose!
(all laugh)
-: Thanks, bud.
(upbeat guitar music)