Showing posts with label Pitt-Hopkins Syndrome. Show all posts
Showing posts with label Pitt-Hopkins Syndrome. Show all posts

Monday, October 31, 2011

Puppies, Buddies & Schools { Clemmons, NC Children's Photographer / Pet Photography }

October has been a busy, busy month here at the studio ...and all around Clemmons!
In between all of the portrait sessions for families, seniors, pets & babies, we have had the honor of being asked to photograph several community events...and even a few historical moments.
As one of the committee members for The Dog Park at Tanglewood, we have been seeing the developments as they unfold. Plans are in the works to break ground in Spring 2012. When I think of all the time we will be spending there, it will mean even more knowing we we were there at the beginning. Many other people will feel the same way because there was a HUGE turnout for Bark4 the Park, an event heal earlier this month to raise awareness about the location and planning for the Dog Park.

Earlier that day we went to the 2nd Annual Race for Victor, a 5K walk/run that honors & helps Victor and others through the Pitt Hopkins Syndrome Fund.The fund is increase awareness and research in the understanding and treatment of Pitt Hopkins Syndrome and offer support to families receiving a PTHS diagnosis.

Then, in the middle of the month, we were photographing families at the Piedmont Down Syndrome Support Network Buddy Walk. It was a beautiful fall day for the many families who came out for this annual event that celebrates Down syndrome Awareness Month and to promote acceptance and inclusion of people with Down syndrome.
Finally, you may have heard a big sigh of relief from all who worked for many hours each week for months on the "Celebrating Our Schools" event, held at the new Morgan Elementary School just up the road from our studio. Frank Morgan, the school's namesake and a longtime teacher and principal for Clemmons' schools, was there along with other community leaders and hundreds of others to enjoy the entertainment, community service booths and all kinds of activities throughout the day.

Monday, July 25, 2011

Choosing Happiness...Another Victory for Victor

One of our studio families recently added another dimension to the love of family...in the form of an iPhone/ iPad app!
While some folks denounce newer technologies, saying that they are keeping us from old fashioned friendships and conversations, the Pauca family embraces these latest developments to improve on the way they communicate. Their son, Victor, has a rare genetic disorder, Pitt-Hopkins Syndrome that causes cognitive and physical impairments and other medical issues. His father, Paul, (along with a team of programming engineers) developed an application named "Verbal Victor" for the iPhone/Ipad that matches images with phrases so a person who has speech limitations can communicate their thoughts and wishes.
We met the Pauca family in 2006 when it was time for the newest member of their family, Victor, to have his first "real" portrait session. His sisters, Francesca & Sofia came along to be included in some of the portraits. They were so excited about their new brother and played with him like he was their favorite baby doll!
At that time, the family didn't know anything about Victor's condition, but soon after, his developmental delays led them to his diagnosis at age 2.
It is hard to imagine how difficult it was when they found out their child has an incurable condition that would profoundly affect him and the family, but the Pauca family is defined more by faith, love and happy times than a medical condition.
His sisters adore Victor and appreciate the joy he brings
Victor at age 4
In this article from Wake Forest University Magazine that tells more about Victor's condition and the iPhone/iPad app , Victor's mom, Theresa says “It helped us realize that happiness is a choice we make. We could choose to be bitter or to be better. We chose to be better.” That is the real victory for Victor and can inspire us all to make the same choice.
Proud grandparents from mom's side of the family...the Plemmons

Victor is now a pretty big boy, 6 years old in August and has just lost his two front teeth, so his smile has changed somewhat, but as you can see from these images, there is a lot to smile about with generations of love in this family!

3 generations of "Victors"