Victor's Journey: Sisters perspective

Wednesday, January 29, 2014

Sisters perspective

Written by Sofia, Victor's sister, when Sofia was 10 years old:

Pure joy is what I enjoy every day from the crack of dawn to midnight when I play with my little brother Victor. Some people may think it’s a burden to have a special-needs sibling, but Victor has taught me to clear myself of all human burden, and soar with happiness. Victor always makes my day with his fabulous smile and his ability to make the best out of life. He is a teacher of true love, as are all the special-needs people all over the world. Everyday he teaches me to love myself and the world more and more, to make the best out of the hardest situations, and to not only recognize the visible things but also the heavenly things that come from the heart, like faith, courage, joy, and most importantly, love. It is these very things that make us rich, heavenly rich. Victor is the joy of my life and the treasure of my heart. I love Victor!

Written by Francesca, Victor's sister, when Francesca was 8 years old:

My little brother, Victor has special needs, and has Pitt-hopkins syndrome. Victor is adorable and shines through everything. He has dark brown hair that is almost black, dark brown eyes and a tan. His smile is big bright and joyful. If there is one thing he does most it is to smile and be happy. He really is a big dreamer.

Although, sadly, Victor is allergic to all nuts, milk and eggs, he is a great leader, learner and listener. He is a small climber. He can not talk so he is not physically a speaker, but he really does speak, emotionally and mentally.
You could paint his fingernails sparkly hot pink and he would love it. Victor is very well rounded.
Victor is someone you can count on. He is social, athletic and can walk and almost run, his syndrome makes him a little slower but he is doing well even though he is only five. Victor, my little brother is one of my role models.

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!