By Danny Baggot @Dan_Baggie
Scroll down for the full story
Videographer / director: Mike Bradley
Producer: Danny Baggot, Ruby Coote
Editor: James Thorne
Victor Padilla was born with CLOVES Syndrome – an overgrowth illness that causes complex vascular anomalies leading to the formation of tumours on the body.
CLOVES, which in Victor’s case stands for Congenital Lipomatous Overgrowth with Vascular Anomalies, is said to have only been diagnosed in 200 people worldwide.
But despite the terrible nature of Victor’s condition, his parents Jennifer and Jerry Padilla have sent him to pre-school in Rochester, New York, and could not be happier with the progress he is making.
Jennifer, 31, said: “Victor doesn’t let anything stop him, he is so motivated. He has proven so many statistics wrong – he has proven all the researchers wrong.
“We’re so thankful to modern technology and the doctors we have in our lives, you know they have saved our son a million times.
“I say God made him extra special – we never knew he was going to be able to do all the things he can and he amazes us every day.
“He has learnt to overcome adversary. The kid doesn’t act like anything has happened.”
Jenny is more than aware of how many CLOVES children are left without a diagnosis and so she was grateful to the doctors who could provide her with the news early on in Victor’s life.
She said: “There are so many complications that go along with his syndrome and for the most part we have kept him out of the hospital.
“When he was first diagnosed there was less than a 150 people, but a lot of people have been re-diagnosed now.
“I think the hardest thing to deal with is the unknown, you know the unknown of what the issues are and once we know the issues we can at least grasp them and try to deal with them and figure out how we can overcome them.
“That’s why we are trying to raise awareness.”
Victor regularly has tests and check-ups with Doctor Kwon - a pediatric neurologist at the Golisano Children’s Hospital who has monitored Victor’s progress.
Doctor Kwon said: “Really the essence of CLOVES is that some of his tissues tend to grow more rapidly then they should – some of his fat tissues grow more quickly on one side of his body.
"The same thing happens with his brain, some of his brain tissue grows a little more quickly or seems a little bit larger than it is on the other side.
“Therefore, some of the risks that we see with CLOVE syndrome have to do with the overgrowth; there is always a risk of tumors developing and rapid growth might trigger seizures.
“Victor has already had some of the complications that we see with CLOVE syndrome and those include epilepsy from the fact that his brain is formed differently on the right side.
“He also has some facial asymmetries and he has somewhat large feet and his limbs are little bit asymmetric.
“The sense I have is this is probably even more rare than being a one in a million kind of disorder.”
Unfortunately, there is currently no cure for CLOVES syndrome and so all the doctors can do is carefully manage Victor and try to deal with some of the implications caused by overgrowth.
And in Victor’s latest batch of results, the family has received good news about his present state.
Doctor Kwon said: “I was just reviewing the recent results with Victor’s family. Mostly, it’s stable. It shows that he has the changes on the right side of his brain that we warn about but nothing looks like it has altered since the last time arrived.
“There is just a little bit of increase in the size of his brain here on right. His skull needs to bigger to accommodate all that brain.
“He is developing in ways that we are happy to see in a three-year-old. Surprisingly, Victor has done incredibly well. He remains incredibly active and very bright boy.
“So I think that I don’t see it causing any future problems. It has nothing to do with his brain stem as for now. We just need keep an eye on him and see how things work out.”
Now Victor is three, his parents have been sending him to a pre-school and they are delighted with how all of the other children are treating him no differently.
Eileen Henwood, Victor’s teacher, said: “Victor is like every other three-year-old.
“He loves to play with his friends, play with the cards, have fun and loves to sing. It’s like teaching anybody else.
“It’s interesting to watch the other kids interact with him because I don’t think any of them do anything different.”
And not only is Victor sociable with lots of friends at school, he has two big sisters to look after him.
Jerry said: “Victor has a five-year-old sister and a 15-year-old sister.
“He adores the five-year-old sister, he wants to be like her, he wants to act like her.
“Yeah his favorite person in the world is mommy - but the kid fears nothing.”
By broadcasting Victor’s story and his battle with CLOVES, both Jenny and Jerry are hoping to raise awareness and help other families who are affected by this almost unheard of condition.
Jenny said: “There are two different organisations; there is the CLOVES Syndrome Foundation and the CLOVES Syndrome Community and they both have different focuses.
“The CLOVES Syndrome Community is there to help and support families in need financially for things to medically support their children and the CLOVES Syndrome Foundation, from my understanding, is more towards helping raise money for research.”
Due to the swelling on the right side of Victor’s face, Jenny and Jerry are looking to secure plastic surgery for their son in the near future and reduce the size of his cheek.
“A lot of the kids have plastic surgery when suffering with CLOVES,” Jenny added.
“But we have never seen any other CLOVES child have facial plastic surgery done - so I think Victor is going to be the first one to our knowledge.”
With all the hardships that life has thrown at Victor thus far, his latest set of results show no signs of rapid change and hopefully make for a steady future.
Jerry said: “Yeah he is little slow in things but for what he has going against him, he is doing phenomenal.
“I think Jenny and I have become really good team of understanding Victor and pay attention to any signs of struggle.
“He is a miracle kid.”