One In A Million Boy With CLOVES Syndrome

One In A Million Boy With CLOVES Syndrome

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.

100 comments / Add your comment below

  1. If anyone dislikes anything from a child, they are truly heartless. Children are the world, children are whath makes me happy. I love & adore them.

  2. Just because his face looks like a Georgia O’Keefe painting doesn’t mean he is lucky he has succeeded and gotten that far with intelligence.

  3. 1 like on this comment=10 views on your channel
    50 likes on this comment= 100 views on your channel
    500 likes on this comment= 400 views on your channel
    1000 likes on this comment, 1000 subscribers= subscribers back, 1000 views back.

  4. When i see people with diseases in my country i pray for them.When i see videos like this i break down in tears

  5. IDK how parents to it. Loving monster looking children. Better people than I could hope to be. Runs in the family, I had 9 tumors removed n my family treats me like a contagious monster

  6. Ugh, this is making me cry. Victor is such a sweetheart, and they just seem like such a nice family. The fact that they could lose him breaks my heart. I know there's no cure, but I hope Victor beats the odds and continues to thrive and prove the doctors wrong.

  7. ??????????????????????????????????????????????????????????????????????????????????????????????? ???????????????????????????????????????????

  8. Every time I watch this movie, I wish I was as strong as Victor. He writes a book and I am going to read it.

  9. OMG when I saw the kid in the thumbnail… I immediately remembered that a kid in my school has this. People run away from him as if it’s contagious.

  10. It's heart breaking my 8year old daughter has also got this condition and chiari malformation. My daughter didn't get diognosed untill she was 6 as the UK are not fully aware of it. We are under so many specialists she's had to have a major operation because of chiari malformation we need to make people more aware about this condition than hopefully more people won't be so ignorant to just stare and give dirty looks or make harsh comments. I worry everyday what life my girl is going to have and every other child.

  11. He's so cute and nice to kids and he's super sweet but it breaks my heart because mother is trying so hard to let him live his life so i hope he can live forever❤❤❤

  12. ‘mummy…….mummy’ my heart!!knowing he’s gonna be bullied because he’s unique breaks me…

  13. The human brain is born empty we learn from the moment we are born we are not born racists homaphobic or even bullies it is learned behavior

Leave a Reply

Your email address will not be published. Required fields are marked *