Joshua’s Heart Story: Pediatric Heart Disease and the Promise of Stem Cell Advances

Joshua’s Heart Story: Pediatric Heart Disease and the Promise of Stem Cell Advances


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 Dick 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.