Renee Baio were blessed with a baby girl last year, but found
themselves dealing with a life-threatening condition known as Glutaric Acidemia - Type 1, at what should have
been the happiest time in their lives.
As a result, they set out to create the Bailey Baio Angel Foundation, an organization
dedicated to raising awareness of metabolic disorders and the
importance of funding expanded newborn metabolic testing in
When not promoting their foundation's mission, the Baio's are
like any other parents getting through the little bumps in the
road, balancing work and home life, all while watching their
daughter grow up.
Scott, do you think waiting such a long time get married
and start a family made you a better father in the long
Yes. I wasn't ready mentally or emotionally before that and
lived a sort of Peter Pan existence for a long time. I worked and
had a few responsibilities but nothing to really write home about.
I had the luxury ... or the disadvantage of being carefree for a
very long time.
At a certain point it got old and there was no meaning. I'm a
deep spiritual guy, I'm a Catholic guy from Brooklyn, but I sort of
walked around going, 'What am I doing?'
It's all about timing. I knew my wife for a bunch of years
before we went out and just sort of happened to run into her at a
restaurant and started going from there.
There are more than 10,000 registered Scott Baio fan
clubs. Do you feel like an icon or teen idol?
No. It's all subjective. It's nice and sounds ok - thank you -
but it all seems out there somewhere.
Like an intangible reality?
Yes. I don't want this to sound flip but it's my life. There's a
great George Harrison quote - and I'm not comparing myself to him,
but someone asked him what it was like to be a Beatle. He said, 'I
don't know, what was it like to not be a Beatle?'
Does 19-month-old Bailey know or care that you're
She has no clue. She will see me on television and she screams
when she sees me but doesn't quite put it together. She just looks
at me and laughs but I don't think she really gets what's going
Would you want her to follow in your footsteps with
Probably not. Too much down side. It's a great gig and if you
get lucky it's an amazing ride, and I've been lucky to have a
couple of rides. But that is so rare that I don't think I'd want
her being around people like me.
Any television projects in your future?
I think so. I'm working on two things right now. Other than
that, life is funny. Things change. Your wants and needs change.
Your goals change. I just don't know. I love to play golf so much I
don't think I care if I work or not. I love my work, my business,
but it doesn't really drive me any more.
Are you mainly sticking with the Bailey Baio Angel
Foundation at this point?
I never really thought about it. In this business you wing it a
lot. You just sort of take what comes and yay it or nay it.
You have a very zen attitude about life, it
Wow! I've become a zen man. It took long enough. I think it's
what happens with maturity and age.
Or with fatherhood.
I think fatherhood has a lot to do with it. Your perspective
changes. Every couple years people change. I just want to be a good
guy and a good father and that's about it. Everything else is
What's your favorite part of being a dad?
All the universal things, really. But my favorite thing about it
is to see her enjoy the things I enjoy. I take her out as much as a
I can. She loves to feed the fish. She loves to play. She loves to
be on the grass. It's such a long answer, I don't think I can be
She looks at me sometimes with such wonder. And sometimes she's
mad at me and you can see that look in her eyes and I love that
about her, too. There's a million things that I love about her. I
play with her, I drag her on the floor on a blanket and she screams
and loves it.There's all that cornball parent stuff that you do
that you never would have done if you didn't have kids. If people
told you would have been doing it you would have said, 'You're full
of crap. You're stupid. I'm not going to do that.' And now you're
I used to see people walking their kids around restaurants and I
used to think, 'You idiot, just put the kid in your lap.' And last
night, there's me, walking around the restaurant holding her hand.
And it wasn't even like, 'Dammit the kid wants to get down,' it
was, 'I'm taking a lap. We're taking a lap.'
It's those things - those small things about a child that warm
Does she have any favorite words?
She says the word, 'boobies.'
So she takes after you.
Ha! My wife taught her that. She's a huge Tom Jones fan. I have
him loaded on my computer. I'll put on his picture and she goes
Any more kids for you?
I don't think so. We had a rough experience with Bailey, and I
don't know if I'd want to go down that road again.
Renee, your pregnancy didn't go as smoothly as you'd
I had my older daughter, Kaelyn, at 33 weeks and 5 days. She
weighed 7 lbs. 4 oz., which is pretty good for that early. I was a
single mom and had her on a military base. There was nothing
glamourous about it. She had to stay in the hospital for nine days
because she had a breathing problem and jaundice and all these
other problems. So I guess you could say I'm not accustomed to
Tell me about Glutaric Acidemia - Tpye 1.
Basically, I just thought we had a baby five weeks early and
that the only reason we stayed in the hospital was for the
C-section. I thought we were bringing home a healthy baby - all was
The next day after we brought her home, we got a phone call from
the hospital asking us to bring her back because there was
something wrong with the newborn screening. I saw the Band-Aid on
her foot from the heel prick and it didn't faze me. I knew all kids
got tested, though I didn't know for what, and knew whatever
testing had to be done just like the hearing test.
So we took her to the hospital to get blood work done, and since
I went that route with my first daughter, I had Scott take her back
there. It was the longest ten minutes I've ever lived through her
Then, we got another call that we needed to do a urine test.
They had to strap a little bag on my daughter beause it's so hard
to get urine from a newborn. About three days later, someone from
the state of California called to see if we had followed up on our
secondary testing. I played the total dumb blonde role and said we
were in the process of doing so, but to tell me what all the tests
were so I could make sure we were getting all of them taken care
of. No one at the hospital had told us what they were testing for,
which makes it more scary.
As the lady is telling us, I'm Googling and it's the worst
possible metabolic disorder there is. The first thing that popped
up was mental retardation, then metabolic crisis, cerebal pasly,
feeding tubes. Most kids don't live past 8-10 years of age. That's
when I became like a journalist and was on the computer all the
time trying to educate myself. When someone doesn't want to tell
you that makes you want to know. You have to work through it in
your own way.
After starting the Bailey Baio Angel Foundation, were
you surprised by the overwhelmingly positive response you
Our first fundrasier had a reasonable goal of $10,000, and that
was my personal goal having never done that kind of event before.
Total sales and donations in six hours were over $16,000. We
surpassed the goal, but in the end, forget the money, it's about
bringing awareness. If we can educate one mother who's pregnant to
get an extended newborn screeining test regardless of whether her
state has one or not, then we may have saved a life. The awareness
is the cherry on the top. It's the gravy. It's the main focus and
the main focal point for my foundation. We had never heard of
metabolic disorder until it affected us. Hopefully we've saved a
life or two, and that alone makes it worth it.
Tell me about your partnership with Smart Mom.
I love them and met them at a celebrity baby gifting event on
January 11, 2008. I will never forget it. Bailey was exactly 10
weeks old, and that was the day we found out she was ok.
I had given the hospital authorization to give us her test
results over the phone and when the phone rang it was in my diaper
bag so I didn't hear it. When we were in the valet line waiting, I
saw that they had called, but it was the one day T-Mobile was
upgrading their voicemail system so I couldn't get to it, though I
could clearly that the call was from Childrens' UCLA. So I walk
into the house, and try to listen to our voicemail, and the
cordless phone needed to be charged so all I heard was, 'Hello,
this is Erica from UCLA ... click.' I had to run to the other
end of the house to redial the number and the whole time Scott is
screaming at me. When I heard the news I hit the floor. It was a
false positive. I couldn't get the words out to say she was ok.
Scott was probably thinking the worst.
I had to replay it and put it on speaker phone for him and my
daughter Kaelyn to hear. And now I tell you, I wear their jewelry
There's less than 100 people in the world that have GA-1. In the
U.S. alone, every day there are six children that have a metabolic
disorder of some sort that goes undetected. And they're not going
to know until that child has some kind of metabolic crisis. The
damage is irreversible and can cause coma or even death.
The test is only $25 out of pocket. There are only 17 states out
of all 50 that have the expanded newborn screening. It can detect
up to 50 disorders. I think it's a political issue as a well as a
moral issue. I think insurance companies should step up and provide
the testing. I believe every child born in the U.S. should have it.
I believe they deserve it. I believe that if Blue Cross Blue
Shield, being as big a company as they are, can afford to offset
the cost for Viagra, then they can not only afford to pay for the
extended newborn screening for every child, but they should also
pay for the low-protein formula that these babies need for the rest
of their lives.
It's all about educating people. We're working a pamphlet on our
website that people can download and print. $25 is two movie
tickets these days, or even a magazine subscription or a tube of
lipstick in a finer department store. It will also save your
We first told our story Father's Day weekend last year, and
within two weeks time we were receiving anywhere from 150-250
emails daily, and the majority were from people affected by
metabiolic disorders. It was like an underground community that
surfaced. Nine times out of ten, those emails were saying, 'God
forgive me, but I was praying that someone in the public eye would
be affected so we would be heard.'
That's one of the main reasons we started this foundation. So
these people can be heard.
I made a personal promise to my God. Give me a healthy child
because I don't have the strength to be a special needs mother. I'm
not one of those people who has the strength of biblical
characters. I'm not Anna or Ruth. You give me a healthy child and I
will devote my life to helping these people.
That's why I'm so passionate about it. I'm keeping my word to my
Convonista says: Talking with Scott and Renee was such a
wonderful experience. Scott was open and candid, and Renee just
amazed me. Her dedication as a mother and advocate is unwavering.
This interview was originally released in 2008.
Maria Pilar Clark is a mom times two and Windy City-based writer.
See more of Pilar's stories here.
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