3-year-old Victor Padilla is battling an extremely rare condition that affects only 200 people worldwide.
The lively tot suffers from CLOVES syndrome, an overgrowth condition that causes complex vascular anomalies that can in turn cause tumours to form on the body.
But despite his tough start in life, Victor has come on in leaps and bounds and is thriving at his mainstream pre-school.
Mum Jenny explains, ‘our child does look different and he was born that way. We never knew he was going to be able to do all the things he can do and he amazes us every day.’
‘He’s very social, he loves his classmates, he loves the kids and they love him.’
Dad Jerry adds, ‘he has learnt to overcome adversity more than anyone I’ve ever met in my life. The kid doesn’t let anything stop him.’
Sadly, many children suffering from CLOVES are left without a diagnosis, so despite the complications the condition brings Jerry and Jenny were grateful that doctors spotted the signs in Victor so early.
Jenny explains, ‘It’s 200 people worldwide so it was a 1 in 50 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 there’s a lot of people that go undiagnosed.’
‘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’re gasping to breathe and they just can’t get that air in and out.’
‘It hurts so bad every time we see a child die with his syndrome. We always wonder if it’s going to be us next. So we are trying to raise awareness for his syndrome and the more we can find out, and the more we know, the more we can do to keep him living for as long as we can.’
In order to keep him as healthy as possible, Victor has regular check ups with Dr Kwon, a pediatric neurologist at the Golisano Children’s Hospital. Thankfully, she is thrilled with Victor’s progress so far.
Dr Kwon says, ‘There’s not a cure for CLOVES Syndrome. It’s a disease that’s managed.’
‘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 some incredibly well. He remains an incredibly active and very bright boy.’
Life certainly hasn’t been easy for Victor so far, but his latest set of results show no rapid change and his parents are hopeful for his future.
Jerry says, ‘He’s a little slow on things but for what he has going against him he’s doing phenomenal.’
Jenny adds, ‘He doesn’t let anything stop him. He’s so motivated for everything, he has no fear, he does what he wants and he keeps trying until he accomplishes his goal.’
‘He’s proven so many statistics wrong, he’s proven all the research that I’ve done wrong. He’s walking and talking and running and learning and playing and he’s very social.’
‘He’s our little miracle.’