WINFREY: It's the story of Jim Kelly, the former star
quarterback for the Buffalo Bills. Take a look.
On the field, he was adored by fans.
Jim Kelly was a star quarterback who led
the Buffalo Bills to four straight Super Bowls.
Off the field, he was surrounded by love from
his wife Jill and daughter Erin.
ERIN: I love Daddy.
Mr. KELLY: It's what everybody always told you it was gonna be like,
when your daughter runs down the hallway or she sees you,
she runs down, yelling, 'Daddy, Daddy, Daddy.'
ERIN: Where's Daddy?
Mrs. JILL KELLY: Where's Daddy? Let's go find him.
ERIN: Let's go find him.
Mrs. KELLY: OK. Let's go find him.
WINFREY: This past Valentine's Day on Jim's 37th birthday,
another beautiful gift arrived: a baby boy named Hunter.
Jim, who grew up in a family of all boys,
had always had dreams of having his own son.
But several months after Hunter was born,
Jim took a blow that was harder than anything
he'd ever faced on that football field.
Mr. KELLY: My son smiled at the beginning a little bit,
and all of a sudden, gradually, it started disappearing.
And all of a sudden, my son became very stiff.
We found out that he suffered from leukodystrophy
and a disease called Krabbe's, and the illness is fatal.
The majority of children don't live past a year or the age of two,
and that's something that--it's hard for us to accept.
WINFREY: At only eight months old, this tiny baby boy has
taught the Kelly family the most important lessons of their lives.
Mrs. KELLY: I've learned to, number one, appreciate time.
I appreciate my faith in God. I appreciate my spouse, Jim.
I appreciate Erin and Hunter.
And most importantly,
I've learned what uco--unconditional love--true unconditional
love is all about.
Mr. KELLY: I don't want anybody to feel sorry for me.
We want people to be more aware of that if you look
across the dinner table, you look in the back seat
of your car, you look, you know, at the children around you,
you look at your--your son, your daughter,
look at your wife, thank God for what you have.
ERIN: I love Hunter boy.
Mr. KELLY: Yeah. You love Hunter boy. I love him, too.
WINFREY: Wow. Well, Jim Kelly and his wife Jill are here
today with their son Hunter.
Because they want Hunter's story to teach people
to cherish every moment with their children,
whether it is a child who is ill or a child who is healthy.
I thought that was so profound what you said.
You just look right around you, you look in the back seat of your car.
And what I was saying to you before we s--we--during
the commercial break is that one of the reasons we wanted
to do this show is so that people get that before there is a crisis,
there is an illness in their life.
Mr. KELLY: That's what it's all about.
I mean, you think of everything that goes on.
I mean, I was blessed to have--come from
a family of six boys and--and no girls.
WINFREY: Mm-hmm.
Mr. KELLY: I'm not saying that's a blessing to have no girls.
But we grew up appreciating each other, knowing what our values were.
And when I decided to marry Jill and we had our daughter Erin and--and,
of course, our son, the first couple months,
you know, it was the happiest day of my life.
I mean, my son born on my birthday, which is Valentine's Day.
WINFREY: Oh.
Mr. KELLY: My brothers all having boys,
so the pressure was on us to have a boy. And all of a sudden...
WINFREY: Mm-hmm.
Mr. KELLY: ...here we were, had a healthy--at the time,
thought it was a healthy baby boy, and within two months,
he started developing stiffness.
And within the four-month period, we ha--we had him tested,
and all of sudden, we find out it was leukodystrophy. And it was...
WINFREY: But at first, Jill, didn't they think
it was--they thought it was cerebral palsy.
Mrs. KELLY: Actually, at first, we thought it was colic.
WINFREY: Uh-huh.
Mrs. KELLY: Because one of the main symptoms
of Krabbe's disease is that they are extremely irritable...
WINFREY: Uh-huh.
Mrs. KELLY: ...and irritable and I--it's like
a constant scream 24 hours a day...
WINFREY: Really?
Mrs. KELLY: ...except for when they're sleeping,
and they didn't--he didn't do much of that,
and so we thought it was colic for so long.
We were changing formulas like you usually do...
WINFREY: Mm-hmm.
Mrs. KELLY: ...when a child has colic.
And then we went in and they looked at him,
and we were just checking for an ear infection...
WINFREY: Mm-hmm.
Mrs. KELLY: ...in fact, and they said that he was showing
signs of cerebral palsy.
And at that time, of course, we were devastated.
However, with cerebral palsy, you can do something about it.
WINFREY: Mm-hmm.
Mrs. KELLY: You can make--you know,
I--we could have made his the best we possibly could,
and we still are doing that. However, they live. And...
WINFREY: Cerebral palsy isn't fatal. Yes.
Mrs. KELLY: That's right.
And so we had another opinion,
and they said he had cerebral palsy again or he was showing signs of it,
and we just weren't really convinced with that.
WINFREY: Yeah.
Mrs. KELLY: Because he continued to be irritable
and he continued to be more stiff, and then we, you know,
had some blood work done, and that's when we...
WINFREY: And so how did they come up
with Krabbe's disease and what is that?
Mrs. KELLY: Well, Krabbe's disease--it's in a family of leukodystrophies...
WINFREY: Mm-hmm.
Mrs. KELLY: ...and what leukodystrophies are,
they affect the white matter in your brain.
WINFREY: Mm-hmm.
Mrs. KELLY: And in a human's brain,
the white matter controls any movements...
WINFREY: Mmm.
Mrs. KELLY: ...your swallowing, your eyesight, your hearing.
And Krabbe's--specifically, Hunter lacks an enzyme
in his body to help produce myelin, which is white matter.
WINFREY: Mm-hmm.
Mrs. KELLY: And because he lacks that enzyme,
there's toxins that build up in his brain and actually,
you know, kill his brain basically.
WINFREY: Mm-hmm.
Mrs. KELLY: And how he actually has the disease is that he
and I both carry the gene.
Mr. KELLY: A very rare gene that--a couple hundred thousand
to one of--odds of us both carrying it and i--the wildest thing
is we both have to be carriers of the gene in order
for our son to have the illness. And...
WINFREY: OK. But it didn't affect Erin?
Mr. KELLY: No.
Mrs. KELLY: No.
Mr. KELLY: Twenty-five percent will be affected with the disease like Hunter.
Twenty-five percent will not even have any--any signs
or any symptoms of it like Erin, or 50 percent can be carriers, like Jill and I.
WINFREY: Wow. And you both had to have it in order for it--to pass it on.
Mr. KELLY: Yes.
Mrs. KELLY: Right.
WINFREY: Wow.
Mr. KELLY: That's what we say, too.
Mrs. KELLY: Wow.
WINFREY: Amazing. So at first, what did--what did you do?
You weren't--were you this hopeful?
This--you--did you have this great outlook at first or first you cry?
Mr. KELLY: Well, cry wasn't the word for it.
We--we shed many tears many days,
many nights trying to finds ways of making Hunter as comfortable
as possible, and also trying to make our daughter realize, you know,
we're not just here to hold Hunter.
I mean, at the beginning--I mean, she's only two and a half years old.
And when he was first diagnosed with it,
our daughter was two years of age, so she wanted the attention, too.
If there was any positive that came out of it,
Mommy's little girl turned into Daddy's little girl.
WINFREY: Really?
Mr. KELLY: And I spent more time with Erin
because Jill was so involved in making sure Hunter was taken care of,
and our family became so close now, and not i--just our family,
but our surrounding families; my family with my brothers and,
of course, Jill's family with her mother and dad.
WINFREY: Yeah. Because you know it can work both ways.
A lot of times when there's illness or disruption in the family,
people go the opposite way.
So what is the prognosis? What did the doctor say?
Mr. KELLY: They're pretty much hesitant right now of coming out
and really telling us how long.
There's only been two--I think two cases of infantile Krabbe's disease
where the children have lasted past the age of two.
Right now, we just give him as much love and care right now as possible.
You know, there's different medications
he's on to make him less irritable, less stiff.
And we're trying to wean him off some of them and seeing if--if
he could open his eyes a little bit more,
which 90 percent--95 percent of the time, his eyes are closed.
But we're coming to find out that it's not really the medication that's doing it.
It's the disease.
WINFREY: It's the disease.
Mrs. KELLY: Right.
WINFREY: Jill, interestingly enough
was saying to me that, you know,
this all seems very sad, but that your house is really a very happy place.
Mm-hmm.
Mrs. KELLY: It's very happy.
WINFREY: Mm-hmm.
Mrs. KELLY: I mean, you know, especially--well, of course,
we have a two and a half-year-old daughter who makes us...
WINFREY: Mm-hmm.
Mrs. KELLY: ...extremely happy with the little things that she
does that make us laugh constantly.
But it's happy because we spend every single minute doing whatever
a normal family would do together. We have a good time.
We play in the playroom, and we appreciate that time...
WINFREY: Mm-hmm.
Mrs. KELLY: ...so much more because we have no idea...
WINFREY: Mm-hmm.
Mrs. KELLY: ...what tomorrow might bring. And we...
WINFREY: Are you always aware that you may not have him tomorrow?
Mrs. KELLY: Yeah.
WINFREY: Mm-hmm.
Mrs. KELLY: I think about it every day.
I mean, there's not a day that goes by that I don't.
However, I try not to look into the future too much...
WINFREY: Mm-hmm.
Mrs. KELLY: ...because it is so hard.
WINFREY: Mm-hmm. What have you said to Erin about it, if anything?
Mrs. KELLY: No, no, we don't really say much.
I--we--you know, I don't think this is the time to say it anyway.
WINFREY: Mm-hmm.
Mrs. KELLY: And I don't think she would understand.
She knows that Hunter, you know, is dealing
with a few boo-boos here and there.
But otherwise, she--that's her brother and this is normal to her.
Mr. KELLY: Yeah. But what's--what's cute about him is Hunter
has to be fed through a G-tube through his stomach.
And Erin's--all of Erin's baby dolls are fed through the stomach now.
And...
WINFREY: Oh.
Mr. KELLY: ...her little button--all--Hunter had a little button,
but everybody else's button is her belly button...
WINFREY: Really?
Mr. KELLY: ...so that's how our daughter feeds all her baby dolls.
WINFREY: Really?
Mr. KELLY: And it--and it's cute.
And we don't do anything to, you know, push her away from doing that.
She enjoys it, and she loves our son just as much as we do.
I mean, she calls him 'little Hunter boy.'
'You're gonna be all right,' and she holds his hand,
and she probably kisses him as much as we do.
WINFREY: Yeah. That's Erin over there half sleeping, half not.
And that's your mom, Jill, right?
Mrs. KELLY: Right.
WINFREY: Yeah.
Who helps--you have a--you were saying
earlier you have a lot of family support.
Mrs. KELLY: We have a tremendous amount of family support.
Jim's brother, number one, has been quite a blessing,
but my mother is--I truly don't know
what I would do without my mom.
WINFREY: Mm-hmm.
Mr. KELLY: I'll put--I'll--let me--because
you always hear things about mother-in-laws and father-in-laws.
WINFREY: Mm-hmm.
Mr. KELLY: I've been blessed with a mother-in-law that I have.
If it wasn't for her, we don't know where we would be.
Number one is I have a career that I'm with NBC Sports
doing broadcasting of games. And I'm away on the weekends.
But more than that, Jackie, which is my mother-in-law,
has taken a leave from absence to spend more time with
Hunter because we don't know what tomorrow will hold.
But more than that, she is able to spend time with him
and give us time that we can spend,
at least go out to dinner every once in a while...
WINFREY: Mmm.
Mr. KELLY: ...because there for a few months,
we were doing nothing but taking care of Hunter and Erin,
which is--which is what we wanted to do,
but we find ourselves at 9:00, 10:00 at night,
after we put both of them to bed, we'd be too tired to spend time
with each other, and we would go to bed.
So, Jackie, thank you very much for everything you've have done.
WINFREY: Oh.
JACKIE: You're welcome.
WINFREY: Thank you.
Mr. KELLY: We received thousands and thousands of letters,
and one thing that we both do and Jill does--and we have help doing it--
is we--we're keeping books, binders,
and we probably have about 10 binders now full of all the cards...
Mrs. KELLY: ...the letters, the prayer cards--everything
you can think about.
I mean, so many people have been--been very good to us.
I mean, we're--our first big fund raiser
is the All-Star Cafe in New York City.
They--they set up just for us for--to Hunter's Hope Foundation.
And the support that we've gotten--I mean, people just lend their hands.
A friend of--Jerry Buchheit took care of us and made sure we were able
to come in here and we can bring all of our family here.
So, so many people pulled together to share this with us.
WINFREY: So the foundation isn't for Hunter.
It's for other people who have--other children who have it?
Mr. KELLY: It's--Hunter's Hope is set up, number one, for the awareness,
like we were talking about it.
The more people that are aware of it,
the better off children are down the road.
And what we're doing now, we're setting up the foundation for research
and hopefully, down the road, the cure.
But our number one goal now is to make people more aware of it.
Because our pediatrician didn't know what Krabbe's disease was.
Our doctors didn't know what it was.
And all of a sudden, the more people that we've talked to,
the more people that have heard about it,
we all of a sudden find out all of these individuals
--more people with Krabbe's disease.
But one thing that we want to both do, we want to be an impact.
We want to be able to do something.
And finally, we wa--we just want people to realize,
love your child no matter if he's disabled, whether, you know,
something's wrong with him or whether he's healthy.
Make sure you love your child as much as possible today
because you never know what's--what's in store for you tomorrow.