Victor's Journey: Race for Victor, 2011

Monday, October 10, 2011

Race for Victor, 2011

On October 1st we held our 2nd Annual Race for Victor, at Tanglewood Park, near Winston-Salem. It was an incredible day for our family. It was our second annual 5K Walk/Run, and it has grown since last year's race. We had 175 participants this year, with 5 Pitt Hopkins Syndrome (PTHS) families who joined us for this very special day: Sue (the co-manager of our support group, the Netherlands), Diane and John with their daughter Emma (New Jersey), Nicole with her daughter Sarah (Ohio), Cathy and Brian with their daughter Sarah (PTHS) and 2 sons (South Carolina), and Sandra and Todd with their son Clark (Charlotte, North Carolina).

The weather was sunny and cool (great for a run or walk). We had about 15 student volunteers from Wake Forest University, music, and homemade cookies and cake from a friend of ours for all the participants. Victor's godfather was the MC, and Paul gave a little talk before the Race about our journey with Victor and the history of the PTHS Fund, before introducing the PTHS families that joined us that day for the Race. We then all walked to the start line and the PTHS families began the Race. Victor started his walk with his two sisters, Sofia (12) and Francesca (9). Paul's mom Maruja then took over and helped him the rest of the way. Last year, Victor walked 320 yards. This year, he was able to walk 0.8 miles which is 1399 yards! Thank you to all the many people who sponsored Victor's walk.

We gave prizes for the top male and female runners (and a female actually came in first : ) ). Many people stayed and visited together after the race. There was a wonderful, handicapped accessible playground right next to the covered shelter for the race. All the children really enjoyed playing together.

Afterwards, the 5 PTHS families came to our house for barbecue (North Carolina style). We had a great time getting to know each other, and enjoyed our children together. It always amazes me how Victor has allowed us to be able to meet so many wonderful people. What a blessing for us!

Just 1 1/2 years ago we started the Pitt Hopkins Syndrome Fund at the Winston-Salem Foundation with $100. With the help of 2 other families of children with Pitt Hopkins syndrome in Michigan and Pennsylvania, we have been able to raise over $30,000, and will soon be sponsoring a grant for the first research into Pitt Hopkins syndrome. This accomplish belongs to everyone involved in this effort and we look forward to continuing to make it grow in the future.

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!