This week, the My Beautiful CHILD Spotlight is on Victor. He was diagnosed with Pitt-Hopkins Syndrome (PTHS), but his diagnosis has not stopped him from being a happy and outgoing child. Thank you to Victor's loving parents, Theresa and Paul for sharing his story.
This is Victor, our precious son. Our names are Theresa and Paul. Victor was born in August of 2005. He has a deletion of chromosome 18q 21.2 – 21.32/Pitt-Hopkins syndrome. We also have two wonderful older girls who are typically developing. Our family lives in North Carolina, USA.
Victor is a very happy child, who loves to meet and interact with everyone — a true extrovert. He has dysphagia, which is a swallowing disorder, and has to have his liquids thickened to a honey consistency. Victor has asthma and has been hospitalized many times due to viral respiratory infections, although as he has gotten older he has been sick much less often.
He also has severe food allergies to nuts, dairy, eggs, and kiwi. Victor has moderate developmental disabilities. He sat at 11 months, 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 Proloquo2Go. We help him learn new things through prompting, repetition, and redirection.
Victor loves listening to music, looking at books, playing with tops, watching favorite videos, using the iPad, playing outside, swinging, kicking a soccer ball, going down a slide, pedaling his tricycle and many other things — he enjoys everything that life has to offer! He is a joy and an inspiration to us all!
To learn more about Pitt Hopkins Syndrome, visit the Pitt Hopkins Research Foundation.
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