Efrin

What does your KdVS individual love the most?

He loves firetrucks, firefighters and any other rescue vehicle. He also loves to laugh and be silly. He loves hiving hugs and kisses and getting cuddles.

How does KdVS affect your child?

He didn’t learn to walk until he was 2.5 years old because he has severe hypotonia. He is non verbal but has learned to communicate so well by sounds and gestures that he and I are able have regular conversations. He has epilepsy, an enlarged aortic root, is missing a kidney and has a submucosal cleft among other abnormalities, but he doesn’t let anything hold him back.

What is the hardest part about being a KdVS parent?

Worrying about him being bullied or not accepted by his peers or by the world. Also, knowing that all he wants to do is grow up and become a police officer, firefighter or doctor and that although anything is possible, it would be extremely difficult because of his challenges, both physically and and mentally.

What is the biggest misconception about being a KdVS parent or an individual with KdVS?

That it’s a negative thing to have a child be diagnosed with a syndrome. It always takes me by surprise when someone hears of my son’s diagnosis and responds with “I’m sorry.” There is nothing to feel bad about or be sorry for. Efrin is such a blessing and is everything and more that I could have hoped for in a son. He’s absolutely perfect.

What would you tell newly diagnosed parents about KdVS?

Don’t focus too much on what they might not be able to do, but rather know that these individuals with this diagnosis are incredible and achieve so many great things. It can be scary when doctors list all the possible complications so just take it one day at a time.

What would you tell doctors, teachers and therapists about KdVS individuals?

Don’t let the diagnosis make You underestimate their abilities. They are some of the strongest, bravest, most resilient individuals you will ever meet.