Friday, January 31, 2014

Sofia and Francesca's 1st video for their brother


This past summer (2013) Victor's sisters made this video for their brother.  It spans his lifetime, with hope for the future, for both Victor and all children with Pitt Hopkins syndrome.  Enjoy!
Posted by at

Wednesday, January 29, 2014

Good Housekeeping Article: Making a Difference


Committed to a Cause: 5 Women Who Are Making a Difference


Get inspired by passionate women across the country who are helping raise money and build awareness for causes near and dear to their hearts.


By Angela Kwan

Published on-line in Good Housekeeping, July 24, 2013


Theresa Pauca

Her cause: Pitt Hopkins Syndrome (PHS), a rare disease characterized by intellectual disability and developmental delay that affects an estimated 250 people worldwide
Who inspires her to give: Her 7-year-old son, Victor, who was diagnosed with PHS at age 2
How she’s making a difference: In 2010, Pauca, a former special ed teacher, and her husband joined forces with two other families to raise money to support PHS research. Two years later, Pauca co-founded the Pitt Hopkins Research Foundation (PHRF) with Audrey Davidow Lapidus whose son, Calvin, also has PHS. The foundation has raised $487,348 (including $30,000 the Paucas helped raise before the organization was founded) and given $364,000 in grants. Recently awarded grants are helping scientists at Harvard University and the University of Alabama at Birmingham research medical treatments for PHS, none of which currently exist.
The Paucas also started an international support group that has connected nearly 300 people from across the US and Europe and as far as Japan and New Zealand. This year, PHRF is celebrating the first International Pitt Hopkins Day on Sept. 18; the date was chosen because PHS is caused by the mutation or deletion of the 18th chromosome. PHRF will also host its first conference, bringing together mothers of children with PHS, in November in the Pauca’s hometown, Winston-Salem, NC.
Her mantra: “I decided a long time ago I could be bitter or better, and I choose to be better.”
Advice on awarding grants: If you aren’t ready to create a 501(c)(3) organization (the official non-profit entity), but want to raise money, consider opening a donor-advised fund at a community foundation. The community fund can financially administer grants on your behalf.
Once you’re ready to start a nonprofit organization, ask around to see if any lawyers will help file your non-profit status. A local law firm took on PHRF as a pro bono client, saving the foundation about $15,000 in fees.
How you can help: Donate to the Pitt Hopkins Research Foundation. Because PTRF is run by volunteers and has zero overhead costs, all donations go directly toward grants. Research could also benefit other neurodegenerative diseases, such as autism.

Posted by at

1st Pitt Hopkins Syndrome Moms Retreat

Our family hosted the 1st Pitt Hopkins syndrome Moms Retreat in Winston-Salem, North Carolina, November 15 – 17, 2013.  The theme of the retreat was Connect, Learn, Collaborate and Rejuvenate, and was designed in the hopes that during these 3 days we would strengthen our connections between Pitt Hopkins syndrome (PTHS) moms, learn from our combined experiences, collaborate to help our children and allow some time to rejuvenate our bodies and minds.  Thirty-one PTHS moms from the US, Canada and the Netherlands attended this retreat.  Families from several countries joined us virtually through Webex to participate in the seminars.

Retreat Agenda:

Friday:
  • Meet and Greet:  5:00 pm - 6:00 pm, Theresa's house
  • Dinner: 6:00 pm - 7:00 pm, Theresa's house
  • Icebreaker event, connect:  7:00 pm - 9:00 pm, Theresa's house (led by Diane)
Saturday:
  • Building a Community:  9:30 am – 11:00 am, Wake Forest University (led by Sue, Nancy and Lynn)
  • Rejuvenate: Group activity--nature walk to Reynolda Village, lunch, and group photo:  11:00 am - 2:30 pm
  • Getting the Most out of Your IEP and Goals:  2:30 pm - 4:00 pm, WFU (led by Theresa, Jessica and guest speaker, Anne)
  • Dr. Andrew Kennedy, Researcher PTHS:   4:15 pm – 5:45 pm, WFU (guest speaker, University of Alabama at Birmingham)
  • Communication / How are you working with your child academically?: 6:00 pm – 7:00 pm, WFU (led by Nicole & Diane)
  • Dinner at Fratellis, 7:30 pm
Sunday:

  • Morning connection, 9:00 am - 9:30 am, WFU, (led by Diane, Audrey)
  • Small Group discussion session, 10:00 am - 11:20 am, WFU, (led by Diane)
  • Wrap up and Good-byes, 11:20 am - 12:00 pm (led by Diane and Theresa)
The planning team:
Diane Krell, chair
Theresa Pauca, hostess
Audrey Davidow Lapidus
Sue Routledge
Nicole Lenzen
Posted by at

Verbal Victor app

Verbal Victor from Christina Lopez on Vimeo.

To honor Hispanic Heritage Month, NBC Latino is honoring and featuring 20 Hispanic-Americans pioneering change in the country and in the community.

PAUL PAUCA dreams up app to communicate with disabled son

by Sandra Marquez Stathis
Pauca-Innovator5:00 am on 09/18/2012 
The diagnosis came when little Victor was just 2 1/2 years-old. The North Carolina boy was afflicted with a rare developmental and cognitive condition that causes delays in speech and motor skills called Pitt Hopkins Syndrome, of which there are approximate 180 cases worldwide. Mom and dad, who had noticed something was wrong at one year just as Victor was only starting to sit up, were heartbroken.
“It shattered our world,” remembers Paul Pauca, Victor’s father, a Peruvian-born software engineering professor at Wake Forest University in Winston-Salem. “It got dark and very, very negative.” But his wife, Theresa, a special education teacher, helped Pauca see things more clearly, telling him he had the option of “becoming bitter or better” and that waiting for him on the other side was his baby boy.
It was a message Paul took to heart—and directly into his classroom at the university, where he enlisted his students to help build an iPhone app for kids like Victor, whose condition also caused a delay in his speech. Pauca understood the need: previous devices for children with communication challenges were expensive—ranging in price from $300 to upwards of $8,000—and impersonal.
So his team developed the Verbal Victor app, which now sells for $6.99 in Apple’s iTunes store, and allows the child to hear familiar voices talking to him. The app shows pictures in the form of buttons on mobile devices. When a child touches the picture of, say, a swing, a recorded voice, usually that of their parent or a sibling, says a word or a sentence such as: “I want to play.”
“One of the features I really love is that parents can customize it with their own voices so it doesn’t have a generic, robotic voice,” says Pauca. The recordings can also be made in any language, says Pauca, “which means I can also talk to Victor in Spanish.”
In the four years since Victor’s diagnosis, and since the app first hit the market, Pauca’s life has been completely transformed. On a new professional course as an international advocate for Pitt Hopkins, he is now also a developer of mobile apps for children and adults with disabilities. “Victor brought meaning and purpose to my work,” Pauca says. “My wife and I have started a foundation. And my daughters are becoming leaders in disabilities and trying to change the world in their own way.” In fact, philanthropy runs in Pauca’s family. His father is a retired mechanical engineer who has created 14 libraries for indigenous communities in Peru, and his mother is a social worker.
Victor, who finally learned to walk at age two, now spends his afternoons riding his tricycle and playing on his backyard swing set. ”He’s an extremely curious little guy,” says Pauca. “He’s very lively and social. And he loves having books read to him.”
Meanwhile, the communication tool his Dad named after him has helped prepare Victor to engage with the world around him. “He’s now pointing at himself and then pointing at what he wants,” says Pauca. “Verbal Victor has taught him that if you touch this button, something you want is going to happen. It motivates him to try and go to the next level, to try and say it or to click.”
Posted by at

Super Siblings in Neverland

This article was written by Theresa Pauca, sharing their daughters' journey of having a sibling with special needs (PTHS).  It appears in the Spring 2013 Exceptional Child magazine, (pages 16-17 online) a publication of the Piedmont Parent, North Carolina.


Victor Pauca may age, but in many ways, he may never have to grow up. So his parents needed to find a way to explain Victor’s complicated and very rare genetic disorder to his sisters, at a level that they could understand.
By Theresa Pauca
I am mommy to three super children: Sofia, 13; Francesca, 10; and Victor, 7. What makes them super? Their positive attitudes, infinite compassion and acceptance that everyone is different. All three children have learned from each other, and each has been given unique talents and gifts.
After my husband, Paul, and I were blessed with two precocious and gifted girls, we had begun to feel like we had done everything right. In fact, to a degree, we felt we could do nothing wrong. Our life was so great because we had made it that way — we felt almost invincible; nothing could shatter our world. Well, that nothing turned into something so life-changing that we could have never imagined it. We were blessed a third time with a son with special needs.
When Victor was born, it was not apparent that he had disabilities. But as he turned from an infant to a toddler, it was obvious he was not reaching his developmental milestones. Now remember, we were coming out of our fairy-tale world, where the girls did everything early. At first we thought he was just moving along at his own speed, but then it became clear that Victor’s pace was extremely gradual. The bubble, which we had carefully built around our perfect little lives, was just then bursting.
After a long road involving numerous doctors, at 2 and a half, Victor was diagnosed with a rare genetic disorder called Pitt-Hopkins syndrome (PTHS). There are only about 250 cases diagnosed world-wide. It is also so rare that there were no associations in the world for PTHS. So we started an international support group, and later the Pitt Hopkins Research Foundation (pitthopkins.org), with the help of some other amazing PTHS families.
What is Victor like?
He is one of the happiest people I have ever known. According to the National Library of Medicine at the National Institutes of Health, “Pitt-Hopkins syndrome is a condition characterized by intellectual disability and developmental delay which range from moderate to severe, breathing problems, recurrent seizures [epilepsy], and distinctive facial features. ... Children with Pitt-Hopkins syndrome typically have a happy, excitable demeanor with frequent smiling, laughter.”
Some of the distinctive facial features are these pronounced Cupid’s bow lips and a wide smile, so children with PTHS are beautiful. Sometimes I like to tell people Victor has “Pitt Handsome syndrome,” just to see their reaction.
What do we tell the girls about their brother?
At the time of Victor’s diagnosis, they were 8 and 5. I am a “glass half full” person and wanted to use a positive message to tell them about Victor, without bringing unnecessary sadness into their young lives.
So I told them that Victor was like Peter Pan. In his mind he would never have to grow up, and we could always enjoy Neverland with him. We could share this special place with Victor forever. We could always enjoy buying him beautiful toys and could play happily with him, forever. I told them he wouldn’t have to do a hard job or even homework.
“Wow,” they said, with smiles on their faces, “Victor’s lucky.”
Is it always easy for our family?
Definitely not! Do we need help from family, friends and our community along the way? Yes! Just this past Christmas, I came to the realization five years after Victor’s diagnosis, that I should stop acting like I could do it all, because I can’t. If someone asks me if they can help, I now say “yes!” Because I know that if they didn’t want to help, they wouldn’t be asking.
What have the super siblings learned?
To be patient, helpful and kind. To accept other people’s differences — all kinds of differences. That we are not perfect and really wouldn’t want to be.
And they can visit Neverland, forever, with Victor.
Theresa Pauca is vice president of the Pitt Hopkins Research Foundation (pitthopkins.org), dedicated to finding a treatment and ultimately a cure for PTHS. She is married to Paul Pauca, who developed the app “Verbal Victor."  Theresa, Paul and their children live in Winston-Salem. 
Posted by at

Sister's curriculum for Victor


One afternoon in January, we were wondering what Sofia was doing on the computer. Maybe Spore or Civilization? Instead, Sofia (10 years old) proudly brought us a wonderful list of activities she had written to do with her little brother Victor (age 4 at the time, now still enjoying these activities.)  Here is her list--Enjoy!
Puzzles
•10 minutes
•Try up to three different puzzles
•Guide his hands, then ask him to do it alone
•No Distractions!
Painting
•As long as Victor is interested
•Finger painting, brush painting, let him choose
•Be sure to have a cleaning device ready
•Let him get creative
Music
•5 to 10 minutes
•No distractions
•Show him how to play the instruments, then let him play
•You play an instrument too
Drawing
•As long as Victor is interested
•Let him choose his color pencil or crayon
•Encourage him, praise him
•Be sure to name it, and show his parents
Dress-up
•As long as he is interested
•If he gets mad, either let him go or undress him
•Never put any hard hats on him
•You may dress him up as a female, unless otherwise instructed
•Do not overly dress Victor
•Let him choose what he wants to put on
Pretending
•5 to 10 minutes
•Try to create skills in him like strength and grip for the future
•This activity includes massaging, please see Victor’s parents for instructions on this
•If your vision of this activity includes action figures, rocks, or any other items small enough to fit in his mouth, watch him closely
•Do not use any breakable items
Dance
•10 minutes
•Victor likes to mess with the radio, and if he finds a song that is appropriate, dance with him to the song
•See one of Victor’s sisters or parents to get ideas or songs to dance to with Victor
•Do not overly spin Victor
Study Time
•As long as Victor is interested
•Tell Victor about the world, share secrets with him, teach him how things work fill his mind with information
•Victor will sustain as long as he is playing or messing with something else, just not noisy toys
Computer Time
•10 to 15 minutes
•Victor has little music videos on his computer that he always enjoys, ask one of Victor’s parents or sisters for directions to get into this program
Gym
•10 to 15 minutes
•Victor will do somersaults
•Show him first, then put his head down and he will roll
•You may do anything fun in gym, just not something dangerous, ask Victor’s parents for ideas and\or suggestions
•Under Sofia’s bed, (in the yellow room) there is a big play mat, use this to produce a soft landing
Reading
•10 to 15 minutes
•Guide him to the books then find somewhere to sit and he will bring a book to you, sit him next to you, then ask him if he wants to read this book, he will answer “uh” then read and follow the same procedure
•Read at least 5 books
Note to the reader: “uh” means yes

Posted by at

"My Miracle," a story by Victor's sister, Francesca


My Miracle
-by:  Francesca Pauca, age 10-
There he was, my glorious miracle in my beloved Mother’s arms. I could not control myself, I raced quick as lightning to see him. “Can I hold him Mommy? Please? Please?” I asked pleadingly. ”Yes.” Mommy said. I plopped down on the bouncy hospital bed, and she placed him gently into my arms. My mind, only being a three-year-old was perplexed and befuddled. Where did he come from? Why is he here? I had so many questions! But I did not need to know, I was just glad he was born.
“I love you.” I said to him softly. Although, something told me he was different, something told me he was special. I didn’t care, I never have. His bright, sunny, blue eyes showed me true kindness. His glimmering, shiny brown hair was flawless. His toothless grin warmed me. “I love you.” I told him again. Otherwise, I was completely speechless. I knew he would always be there for me.
“ I love you.” I whispered to him once more. Here he is, in my own arms, my extraordinary miracle, my incredible brother, my awe-inspiring, spectacular, phenomenal Victor.

Francesca's story won 3rd place in the PTA Reflections Art Contest for the Winston-Salem/Forsyth County School District (North Carolina), Literature Division, Elementary 3-5.  Reflections is a National PTA Art Contest.  The theme this year was the "Magic of a Moment."

Posted by at
Subscribe to: Posts (Atom)