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 spend time with his family. He has dysphagia, which is a swallowing disorder, and now has a G-J feeding tube, placed at age 15. Victor has respiratory issues which require medications and respiratory equipment. He also developed epilepsy at age 10, but his seizures are under control after finding the right medications for him. He took his first steps at 2, and began walking independently at about 2 1/2 years old.  He needs help with curbs, stairs, and uneven ground.

Victor is very curious, and investigates all things in his environment. His receptive language is much more advanced than his expressive language. He is non-speaking. Pointing has helped Victor tremendously to let us know what he wants and to make choices, and he also uses Touch Chat on the iPad to assist with communication. We help him learn new things through prompting, repetition, and redirection. Victor loves listening to and playing music, watching favorite videos, enjoying his Playstation, using the iPad, listening to favorite books, going shopping, playing outside, swinging, kicking a soccer ball, going for walks, going to museums and many other things – he enjoys all that life has to offer. He is a joy and an inspiration to us all.

Victor’s sister, Francesca, has an Instagram account about Victor, sibling caregiving and advocacy, called @holdingvictorshand. Victor’s sister, Sofia, made a documentary called Growing Together, about the journeys of six families of individuals with developmental disabilities in the US and Peru, including our family. Victor has a blog, called Victor’s Journey, documenting his life from 3 to 8 years old. Please visit these links to learn more about Victor and our family.