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At this time, what I'd like to do
is to really bring this home to you
and illustrate why we're doing all the things that we're doing
to understand the problem of heart disease in children.
As a pediatric cardiologist,
every time I tell a parent
who has a newly born child--
and any of you who have had children
know that you go through nine months of excitement
and anticipation of a child you're going to raise,
and you have dreams.
And then, to be told by someone like me
in a room, that... "This is the problem,
"and we may be able to save your child,
or we may not."
It's a devastating thing.
And even if we're able to save that child,
there are consequences that are lifelong
the parents and the child have to deal with.
And so we must do better,
and the things that I described to you today
are how we're trying to approach that.
I'm going to introduce to you now Mary Goulart,
who will share with you
her story of her young son
who's, I think, now 11--
was born without a left ventricle,
is actually doing remarkably well right now.
But he has a looming problem on the horizon
where he will require a heart transplant
if we're not able to find a better solution for him.
And that's not a great solution for a 15- or 20-year-old.
It may be good for *** Cheney.
It may be good for a 70-year-old.
But it's not a good solution because they don't last a lifetime.
And so I'd like you to hear Mary's story
and I think you'll understand why we do what we do.
Mary?
Well, it's an honor to be here today,
and I'm just gonna pass this around
so we can put a face
to how important all of this research is.
And if--Deepak, if you would pass that around.
That is my son.
And my name is Mary Goulart,
and again, I am really honored to be here today.
I'd like to briefly share my son Joshua's heart story with you
to illustrate why stem cell research
and regenerative medicine
is suddenly become so important to our family.
In 2001,
the day before 9/11,
I was only four months pregnant
when we discovered through an ultrasound
that our baby boy had multiple heart defects.
Most importantly was hypoplastic left heart--
so basically half a heart.
My husband and I were devastated by the choices we were given
about how to treat his condition.
And also by the option that we--
many choose not to.
After his birth,
Joshua endured three open heart surgeries
and a massive stroke that killed 60% of his left brain,
and we were told he may never walk or talk.
I'm sorry.
But I would like to tell you who Joshua really is.
He was placed in the one-percentile survival bracket,
but he was saved by modern technology,
by advances in research...
for a condition
that once left families with no choice
but to let their babies die.
At eight months old, we enrolled our son
in a early start program.
And we began with physical and occupational therapy
twice a week.
Eventually, we added feeding therapy,
speech therapy, restraint therapy,
and even hippotherapy,
which is a specialized form of therapeutic horseback riding
that builds core body strength, confidence, and self-esteem.
From the beginning, our little fighter gave his all,
and he pushed himself to use his weakened right side,
to gain balance in his unsteady body,
and to teach himself to taste, chew, and swallow
because he had been fed through a feeding tube
in his stomach for the first four years of life
and didn't know how to do any of this.
His partially paralyzed vocal cords
and a deficit in oral sensation
made it very difficult for him to use language,
and the damage to the left side of his brain
made it very hard for him to express his feelings
and his thoughts.
It was exhausting.
But we did not give up, and most importantly,
neither did he.
By age two, Joshua began to walk.
And we were told he may never walk
or talk.
And by four, he was able to put sentences--
short sentences together,
and to express the way he was feeling
and what he was thinking.
His therapies continued,
as did his determination,
and by six years old,
Joshua was welcomed as a member of the Quito Little League
down in our area near Campbell.
He not only learned how to play baseball
and be a proud member of a team,
but by the end of the first season,
he actually learned to run.
Joshua's journey has been paved with incredible challenges,
but more importantly, incredible accomplishments.
He now helps schedule his annual cardiology appointments,
he reminds me of his therapy appointments,
and he works with a tutor
to help him with his academic challenges.
Joshua is very proud to share his story.
And he knows that he is a miracle,
and seen by a miracle by many,
even his young peers who often ask pointed question
as to why he wears a brace on his right hand
and has all these scars all over his chest.
And although he sometimes worries
about the future health of his heart,
as we all do,
he feels secure and surrounded by great love.
And he knows
he has some of the best heart doctors in the world
watching over him.
Today Joshua is a happy, active eleven-year-old boy.
He is well behaved and very humorous,
and has special education in his school in Campbell.
He adores his best friend Jeff
and loves to play baseball,
kickball, music, and learning on his new iPad.
His passion is weather.
Big storms, strong winds,
and anything that has to do with Mother Nature's power.
It's interesting.
Over the last decade,
Joshua's experience with heart disease
and his courage to push himself beyond all expectations
has modeled to us, his family, and his friends
what true determination and perseverance is.
He has shown us that with love,
anything is possible.
And because of that,
I am committed to share his miraculous journey
on behalf of all the children and all the families
who have been touched by their own heart stories.
Only 30 years ago,
the joy of loving our son
and watching him grow and thrive today
would not have been possible.
But because of long-term funding
and incredible research,
our precious boy,
along with hundreds and maybe even thousands of others,
is here to show us there is always hope.
So our hope now, today,
is that regenerative medicine can find other options for our son,
should his heart start to fail in the future.
I'm very, very hopeful,
and I must say that my gratitude for all of you--
everyone who works on this--
runs very, very deep.
And I sincerely thank you
and appreciate your commitment
to support this essential research.
Thank you.
Thank you, Mary, for sharing your story.
And I think that it really illustrates to you
why we need to do better
and what the work that you're funding is going towards.
Thank you very much.