JENNY PADILLA: Our child does look different
and he was born that way, and we never knew he was going to be able to do all the things
that he can do, and he amazes us every day.
EILEEN HENWOOD: Victor is like every other
3-year-old. He loves to play with his friends, have fun. It’s interesting to watch the
other kids interact with him, because I don’t think any of them notice anything different.
So, they just, he is just another kid in the class.
VICTOR PADILLA: This is me.
JENNY PADILLA: Yeah, what do you say?
JENNY PADILLA: I mean he is very social, he
loves his classmates, he loves the kids, they love him you know, and…
JERRY PADILLA: He has learnt to overcome adversity, and work harder than anybody I’ve ever met
in my life, I mean, the kid doesn’t let anything stop him.
COMM: 3 year old Victor Padilla, was born
with an incredibly rare condition, known as CLOVES Syndrome.
JENNY PADILLA: I had a lot of pregnancy complications
that kind of indicated to me that he was going to have some neurologic issues.
COMM: CLOVES is an overgrowth illness that
causes complex vascular anomalies, often leading to the formation of tumours on the body.
JENNY PADILLA: It’s 200 people worldwide
so, it was like a one in fifty million chance of developing this. When he was first diagnosed,
there was less than 150 people, a couple of years ago. So, I firmly believe that there
is a lot people that go undiagnosed.
JENNY PADILLA: There are so many complications
that go along with his syndrome and for the most part, we’ve kept him out of the hospital.
He does have things come up and surprise us all the time. It’s terrifying holding your
kid, when they are gasping to breath and they just can’t get that air in and out.
JENNY PADILLA: We were hopeful for his future,
but, you know, they don’t know, you know, it hurts so bad every time we see a child
die with this syndrome. You know, we always wonder, if it’s going to be us next. So,
we’re trying to raise awareness for the syndrome, and the more we can find out, the
more and the more we know, the more we can do to keep him living as long we can.
JENNY PADILLA: So, we try to still keep it
positive with all of his doctor’s appointments.
COMM: Because of the nature of his disorder,
Victor regularly visits Dr. Kwon, a paediatric neurologist who has been monitoring his progress
since he was born.
DR. JENNIFER KWON: So, some of the risks that
we see with CLOVES syndrome have to do with the overgrowths, so there is always a risk
of a tumour developing. So Victor has already had some of the complications that we see
with CLOVES syndrome. Those include epilepsy from the fact that his brain is formed differently
on the right side. He also has some facial asymmetries, but surprisingly, Victor has
done incredibly well. He remains an incredibly active and very bright boy.
DR. JENNIFER KWON: I think that it’s hard
to tell just from looking at the picture of his brain what he can and can’t do. That’s
why it’s been great to see him and see all the things that he’s doing, which are very
typical and very reassuring. This is a pretty rare, unusual syndrome. Is there a cure for
CLOVES Syndrome? No, there is not a cure for CLOVES Syndrome. It’s a disease that’s managed.
JENNY PADILLA: He doesn’t let anything stop
him. He is so motivated for everything that…he has no fear. He does what he wants and he
keeps trying till he accomplishes his goal. He has proven so many statics wrong. He has
proven all the research that I have done wrong, you know, he is walking and talking and learning
and running and playing and he is very social. JERRY PADILLA: He is a little slow in things,
but for what he has going against him, he is doing phenomenal, he is a miracle kid.
JENNY PADILLA: Yeah, he is our little miracle.