Victor’s Story

This is Victor, our precious son. Our names are Theresa and Paul. Victor was born in 2005. He has a deletion of Chromosome 18q 21.2 – 21.32 / Pitt-Hopkins Syndrome. We also have two wonderful older girls, Sofia and Francesca, who are typically developing. Our family lives in North Carolina, USA.

Victor loves to meet and interact with everyone. He has dysphagia, which is a swallowing disorder, and has to have his liquids thickened to a honey consistency. Victor has severe GI issues which require many medications and supplements. He also developed epilepsy at age 10, but his seizures are under control after 2 years of finding the right epilepsy medication for him. He stood alone at almost 2 years old, took his first steps at 2, and began walking independently at about 2 1/2 years old.  He has a little bit of an ataxic gait pattern, and needs help with curbs and stairs.

Victor is very curious, and investigates all things in his environment. His receptive language is much more advanced than his expressive language —he can understand much of what you say to him, but currently is not speaking yet. Pointing has helped Victor tremendously to let us know what he wants and to make choices, and he is beginning to use some signs. He also uses a communication app developed by his Daddy for the iPad, called Verbal Victor, and also uses Touch Chat.  We help him learn new things through prompting, repetition, and redirection. Victor loves listening to and playing music, looking at books, learning how to read, watching favorite videos, playing the Wii, using the iPad, going out to eat, going shopping, playing outside, swinging, kicking a soccer ball, going for walks, going to museums and many other things – he enjoys everything that life has to offer! He is a joy and an inspiration to us all!

Victor has a blog, called Victor’s Journey,  from 3 years old to 8 years old.  Please visit to learn more about our son:  http://victorpauca.blogspot.com