Victor's Journey: The girls write about their brother

Sunday, April 6, 2008

The girls write about their brother - July 2, 2007

Sofia, Victor's oldest sister, wrote this story about Victor at school this year. She is 7 years old.

My baby brother Victor!

By: Sofia Mariela Pauca

This book is dedicated to: my baby brother Victor because he has and will have hard times in his life!

My baby brother Victor has a special place in my heart. One night my mom went to the hospital and Victor was born!He had the umbilical cord wrapped tight around his neck! Everyone was miserable!

He is super skinny just like my mom! I love when I can just snuggle up with him because he is so warm! He has handsome black hair, and he is so cute. We are beginning to see what color his eyes are but we do not know yet.

Victor is extremely funny when he is eating food! He gets it all in his hair and clothes (especially rice) when we let him eat all by himself. He almost never cries! Victor and I like to roll around together. Victor gets scared when someone says no in front of him! Victor loves you to brush his tiny teeth. Victor treasures his milk, what he loves the most is my whole family. He has to have physical therapy, he enjoys it. He is really trying to walk! I admire him because he puts so much effort into his physical therapy.

I should always try to protect him and he should always try to protect me. He is the best baby brother in the world!!!

Francesca, our second child, dictated this story to us about her baby brother, Victor. The story also has adorable illustrations. She is 5 years old.

To My Brother Victor

by Francesca Pauca

Victor, you are a present.
Victor walks holding his (she means your) hands.
Victor on his gecko. (this is Victor's new equipment that helps him practice standing)
Victor and Francie. (in the illustration they are holding hands)
Mommy loves Victor.
Victor plays with his toys.
Victor gives cute hugs and happy kisses.
Victor is a cute little boy, and so cute.

Our Vision

We wish to develop a large community of friends around Victor who:

Allow themselves to be filled with the joy that Victor stirs within people who get to know him for whom he really is: a happy child rejoicing in the smallest things of life, reminding everyone to live for the moment,
Accept the differences brought by people and children with special needs as an integral part of society,
Understand the challenges people and children like Victor face and are willing to be advocates for their needs, and
Want to help make a difference in other people's lives by sponsoring research into rare diseases like Pitt Hopkins syndrome.

Victor's 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. He also has severe food allergies to nuts, dairy, eggs, and kiwi. Victor sometimes holds his breath for a few seconds when he doesn’t seem to be feeling well or is very tired. Victor has developmental disabilities. He rolled over at 9-10 months, sat at 11 months, crawled/bunny hopped at 14 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 wears custom orthotic inserts in his shoes to provide proper alignment and added support when walking. 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, putting 2-3 signs together at a time. He also uses a communication app developed by his Daddy for the iPhone/iPad, called Verbal Victor, with much success! 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!