A Mother Speaks of Her Son's Life With Prader-Willi Syndrome

When you are awaiting the arrival of your new baby there aren’t enough words to describe the joy you feel. The anticipation grows inside of you along with your baby. Then that blessed day comes, however it isn’t as you imagined it would be. Your little angel comes into the world only he isn’t crying like the babies on the television, he isn’t kicking or flailing his arms about. Instead your baby is virtually silent, “floppy,” and as hard as you try he just won’t eat. This being your first child you think this will pass. Then the nurse comes into your room and without any warning or emotion says that your baby is being taken to the NICU. That is how it all starts, that is how your journey begins. As the years pass you know that there is something plaguing your little one but you can’t find the cause. You spend all your time researching, going to doctors, and subjecting this precious little soul to more blood tests than any one person should have to endure. You hear the same thing over and over again, “Your child is fine, your over-reacting, he is just big because he eats too much.” Your heart breaks every time another test comes back and says he is fine, because you know in the deep part of your soul that he isn’t.

This is my life and this is how I have spent the last three years. It was only after 32 months of searching for a diagnosis was one finally delivered. The devastating news was delivered via telephone on September the 14th of 2009. When I got the call I think I already knew what that voice on the other end would say. “Listen,” oh I knew what was coming next. “I have bad news Blaise has a 15q deletion.” I already knew what that was. I knew that a 15q deletion meant that my son had Prader-Willi Syndrome. Those three words had haunted me for close to two years. It had already been brought up and explored. We worried about the possibility, but we were told his chromosomes were fine. No, indeed they weren’t. He was missing half of his 15th chromosome and that only meant one thing. That meant that my son was suffering from a rare incurable genetic disorder. I felt the bottom drop out, my heart lay on the ground broken into a million pieces. My world was forever changed. I immediately started the intense research about his syndrome. Everything that I read was the stuff that nightmares are made of. What nobody tells you is that what you read on the internet is not the life your child will have. If only they could tell you that as time goes on it does get better. There is no cure, and life will never be easy, but it will be filled with joy and laughter and plenty of love to go around.

What is Prader-Willi Syndrome? It is a rare genetic disorder that occurs with every 1 in 12,000 births globally every year. It presents in both boys and girls equally. What does it mean for my son and the thousands like him? PWS effects almost every system of the body, PWS individuals suffer from short stature, small hands and feet, abnormal sleep patterns, the inability to regulate body temperature, obesity, developmental delays, and behavioral problems. PWS individuals also suffer from a host of unique and unusual medical conditions. For most of the families and those who know PWS, there is one trait of the syndrome that is the most challenging. Our loved ones have the inability to have normal hunger and satiety cues. Some people giggle when you say this and say, “Oh I must have that I am always hungry and eat too much.” That brings such pain in my heart that they could have such ignorance. My son is hungry ALL DAY, EVERY DAY OF HIS LIFE. There is nothing that can be done to make him feel better. My child could eat a 12 course meal and still think he is starving. Other children describe the feeling of hunger as piranhas eating your stomach from the inside out. One of the dangers of PWS is the individual being in an unsafe food environment. If left in an unsafe enviornment they could literally eat themselves to death. My child’s life depends on me. I have to keep him safe all day, that includes monitoring his calories and keeping food locked up. To make it even more challenging PWS is also a metabolic disorder, so not only is my child starving but he can only eat low calorie food in small portions. It is the danger of food that prohibits our loved ones from living a fully independent life. Yet another blow to all the dreams you had for your child; of going to college, getting married and having a family of their own. 

Thankfully we are in an age of research, technology, and dedicated parents who can make a difference in the lives of those with PWS. We are the new face of PWS and we will not be defeated, we believe there is a cure for our children, and we believe it is reachable in their lifetime. So we spend our days not wallowing in self pity, defeat and grief. Instead we are motivated, dedicated, and determined to lead the way. My son’s best chance at that independent life that I dreamed for him is through research to find a cure. Research costs money, and to get money you need to create awareness. This is how I spend my days. I want the world to know about this rare genetic disorder, the most common of all genetic disorders. I want the world to know that my child is not a statistic he is a person. His name is Blaise Major Owings and he is the greatest gift on earth. He is funny and loving. He is dedicated and determined. He is charming and handsome. But most of all he is a true inspiration to all who meet him. He has been through more in his 4 young years on earth than most will endure in an entire lifetime. Yet he wakes up every day with a smile on his face. He smiles everyday even through the pain and frustration that he must feel. I will never give up on him, I will never stop fighting, I will see that a cure is found for him. I owe him that much. 


Please help me spread awareness for Prader-Willi Syndrome. Please believe in our children. 

For more information please visit
www.fpwr.org
www.fpwr.ca
www.pwsusa.org

Rachel Alyse Pastiloff

Justin Bieber In Fender Bender

Justin Bieber was in a Studio City parking structure on the 10900 block of Bluffside drive, when he was hit from behind by a Honda Civic at around noon, on August .  It is not public knowledge who was driving the Civic, and the accident was so minor that a police  report was not filed, although the police were called.  The paparazzi arrived before the cops, and the media circus over a car tap began.  An unidentified passenger was riding with the Bieb, although probably not a celebrity.

Shortly before the crash,  Everlast (Erik Schrody) of House of Pain, tweeted, “I just raced @justinbieber down Ventura in his Ferrari I won but a Fedex truck got in his way,” Everlast was driving an Audi R8.  


We hope Justin keeps safe and is more careful with his new $200,000 black Ferrari.  Street racing isn't habit forming.

Bieber photo by Masha Chernistkaya

Sunday Come Out and Support a Cure for Prader Willi Syndrome

This Sunday at 9:00 at the Santa Monica Airport, the organization One Small Step is raising funds for the Foundation for Prader Willi Research (FPWR). The FPWR is dedicated to improving the lives of those with PWS by funding research which will lead to treatments to help our loved ones lead happy full lives. So far FPWR has raised $1.6 million and has a goal of funding the first ever NIH sponsored research plan for Prader Willi Research.

Please help us to spread the word and invite people to join our One SMALL Step Walk/Run on August 28 at Airport Park in Santa Monica. (5K or 1mile routes)

Here are the ways you can help us...

1. Sign up on line at: http://onesmallstep.fpwr.org/ca/santa-monica, to create a page only takes 5 minutes.

2. Then, email your friends and ask them to sponsor you. They can do this online too or just by sending you a check.

3. Ask your friends and family to come out and walk with us!! They too can create a fundraising page and send it to their friends too!

4. Or, just sponsor us by clicking on this link and make an online donation.http://onesmallstep.fpwr.org/dw/walking/location/36 

Please consider becoming a virtual walker by creating your page and emailing it out to everyone in your contact list and walk where you want to! 

Raise $40 and get a t-shirt, lunch and a concert with amazing children's musicians DiDi Pop didipop.com and Randy Kaplanhttp://randykaplan.com/

Raise $200 and get a chance to win an XBox 360!
Raise $500 and get a chance to win a vacation with airfare for two!!!


My Teen Topix will be at the event, introduce yourself to our photographer and say hello.  Who knows, you may be in the next My Teen Topix blog.  We will be covering the event with a big pictorial.  Please come and join us this Sunday. We WILL find a cure!

Hurley Sponsors The Shortboard Revolution at Santa Monica's California Heritage Museum

When Bob Hurley started the Hurley brand of surfboards in the 1970s, his love of the beach and surf culture soon turned his company into one of the most successful brands to celebrate the burgeoning Southern California ethos. The company has expanded into a brand that celebrates youth, music, surfing,  skateboarding, and all things cool. Its extensive product line extends to clothing, purses, backpacks, sun glasses, and so much more. It is only fitting that Hurley is now sponsoring an historic look back to the early days of the shortboard, when the sport of surfing became the symbol of Southern California youth culture. Hurley's The Shortboard Revolution opened at Santa Monica's California Heritage Museum to a packed group of surfers, hodaddies, peelers, salty sisters, and a fair share of pula kahulas.

The event and exhibit celebrates the history of the shortboard, a more maneuverable, high-speed surfboard that had its birth in the late 1960s. Surfing had gained a huge popularity in the early 60s with the movie Gidget, "Malibu Chip" boards, and the surf music of the Beach Boys, but its popularity was beginning to wane, when the McTavish/Young Sam short board brought new life to the sport.

Setting up for the Hurley Opening in the courtyard of the 

Victorian Santa Monica California Heritage Museum

The Shortboard Banner

As the sun sets, the event begins, and the crowds start to form to get into the Museum

By the late 1960s and early 1970s, short boards had become more common. In the seaside area called Dogtown (south Santa Monica, Venice, and Ocean Park beaches - a poorer neighborhood on the westside of Los Angeles), an aggressive and fearless band of young surfers road the waves of "The Cove," a secluded area near the deserted Pacific Ocean Park amusement center.  They had mostly grown up poor and some were even local gang members. Surfing became their life.

In 1972, the Jeff Ho Surf Shop opened for business, and Ho, Craig Stecyk, and Skip Engblom created Zephyr Surfboard Productions.  Then came the Zephyr Surf Team,  made up of young local surfers, who grew up tough and whose in-your-face surf style fit the atmosphere of their often violent neighborhood.  Craig Stecyk designed boards with graphics inspired from graffiti, not the traditional idyllic scenes of Hawaii on long boards. 

The Z-Boys of Dogtown: Cris Dawson: center and Jay Adams: right

The Zephyr team, known more commonly as the Z-Boys followed revolutionizing surfing, by reinventing the skateboard. Skateboards in the 1950s were made in garages from wood and disassembled roller-skates, but these clunky boards had basically disappeared by the time of the Z-Boys.  When urethane wheels were invented, the Z-Boys turned skateboarding into a form of "surfing on concrete."  They would search out empty swimming pools to invent more and more exotic stunts.  Craig Stecyk, in the then newly republished Skateboarder  Magazine of 1975, created a series of articles called the "Dogtown Chronicles," and when the Del Mar nationals hit in the same year, the Z-boys became gods to skateboarders across the world.

left: Artist, photojournalist, Craig Stecyk III. Stecyk painted many of the early

Jeff Ho boards.  His fine arts sculpture and painting is world renowned.  

Craig's influence on the art world has been compared 

to that of Basquiat, Larry Clark, and Raymond Pettibone.

He was a major influence on graffiti artists such as Shepard Fairey and Banksy.

Many of the Z-Boys were in attendance at the opening of the Hurley Shortboard Revolution exhibit to check out the boards that they once rode in the 1970s.  The slums of Dogtown have changed, and the event at the Victorian-style  California Heritage Museum was a laid back, yet elegant tribute to the pioneers of the shortboard.

Original Z-Boy Cris Dawson

left: Z-Boy legend and original Zephyr Surf Team member Allen Sarlow, 

Pat O'Connell, famed surfer featured in The Endless Summer, 

Pat is currently head of the Hurley Athletes Team, and friends

right: Skip Engblom,  one of the creators of the Zephyr Surf Team and 

Skateboard team.  He is currently the owner of the 

Santa Monica Airlines skateboard company.  Skip and the Z-Boys' story was told

in the movie, Lords of Dogtown.  The late Heath Ledger played Skip in the film.

Hurley with the help of the peakPRgoup supplied great food and drinks to the attendees.  Sponsors supporting the event included, Cocoa-Cola, smartwater, Justin  901, Ultimat, the ONEHOPE Foundation, Honest Ade, Honest Tea, and Patron.  

Honest Ade and Honest Tea helped supply the refreshments

Annie Imamura sips a Coke Zero

A feast fit for any Surfari

Treats with a Hawaiian flavor

The Hawaiian music meets the Surf beat with an electric ukelele

It was fun for this family taking the pause that refreshes

Modern-day Gidgets 

peakPRgroup Christine Peake, Annie Imamura of 

Noted Communications, and Hurley's Courtney Skiba

Hurley's Courtney Skiba with date Jeff Utrton and Justin Biel from 901

Oliver Peake and Nicholas Landis.  Oliver will have his head-shaven 

next month to support St. Baldrick's Children's Cancer Research.  Don't

forget to contribute by clicking here.

Actors Jeff Woodrow and Domenic Ricci

Writer/Director Shanna Sosin and Director/Producer Susan Dynner

Laura Wasser, VP of Marketing at Hurley and 

Evan Slater, VP of Brand Communication at Hurley

 Jason Maloney, Directory of Art, Hurley; Scott Patt, VP of Art, Hurley;

 Taylor Brigandi, Marketing Coordinator, Hurley; 

Madison McMains, Hurley “Icon”; 

Greg Teal, Music Marketing Manager, Hurley

The beautiful Museum grounds at night

The exhibit of short boards from the late 60s to the mid-80s was curated by one of the original Z-Boys, Nathan Pratt.  From the earliest Vee Bottom boards of the 1960s to Pintails, Guns, Super Shorts, and Wingers, this exhibition offers a variety of boards and images that spotlight the innovations that changed surfing forever. 

Terry Hendrick's Isurus board from 1976, with its highly customized

design had a flex tail and double knee-well deck and spoon nose

A collection of Surfer Magazines bring back memories of 

the shortboard's golden age.

Kit Rice poses next to a board she used to ride- the dual fin Joe Roper board

from La Jolla's Windansea beach

Kneeboards and Papios were boards used more for body surfing

rather than standing surfing.  The popularity dwindled about the time

of the skateboard revolution

A surfboard and early Surfer Magazine poster from the Nathan Pratt collection

Vistors check out a pair of mini guns for riding the steep hollow waves.

Boards by "Da Cat" of Malibu

Big Guns used for the large waves of Hawaii

Board designs go from solid colors to elaborate graffiti-influenced airbrush psychodelia

A reconstruction of a shaping room, much like the ones used by

renowned shaper Bob Hurley and Nathan Pratt in the 1980s

Historic photographs by Art Brewer, Jeff Divine, Steve Wilkings, Bernie Baker, Tony Friedkin, David Darling, C. R. Stecyk III and many others document the movement and its personalities.

Nearly 70 rare and antique boards by surfing legends and visionaries such as Tom Blake, George Greenough, Dick Brewer, Miki Dora, Jeff Ho, Mike Hynson, Horizon’s West, Tom Curren, Bob Hurley and Al Merrick—assembled from the world’s finest collections including Bird’s Surf Shed, the Jason Cohn Collection, the Hischier Family Collection and the Surfing Heritage Foundation—illustrate the timeline and development of the shortboard.

This exhibition was funded, in part, by a major grant from Hurley, and additional funding from Wells Fargo, Copyland, the City of Santa Monica Cultural Affairs Department, The LLWW Foundation, The Fairfield County Foundation, The Victorian/Calamigos Ranch, Dawson Design, as well as generous corporate, foundation and private individual donations. The exhibit runs through April 22, 2012, and is a must see for anyone visiting Santa Monica. 

The museum also had an exhibit of Hawaiian Chic decor popular in the 30s, 40s, and 50s, which complemented the Hurley Short Board Revolution event nicely.  The California Heritage Museum is located at 2612 Main Street, Santa Monica, CA 90405

Dressed in a beautiful Hawaiian coat, a California Heritage Museum Docent

welcomes you to the museum

Hawaiian Chic Decor

The Museum exhibits, in the words of one Surfer/guest, were

"bitchin'"

Aloha nui loa!

photos by Allan Peach ©2011

Advertisers Welcome

Due to a recent ruling in California to tax internet transactions, our main advertiser, Amazon has canceled all California-based affiliate sponsorship.  Therefore, My Teen Topix is looking for new companies or individuals to sponsor our blog. We are read in over 115 countries and and have a strong readership made up of both teens and adults. We try to make a difference in the world, by bringing important books, music, and events to the attention of our readers.  If you are interested in helping to support My Teen Topix, drop us a line for our ad rates or simply help out with a donation pledge at editor@myteentopix.com.

Thank you,
The My Teen Topix staff

The Hunger Games The Book and The Upcoming Movie

The Hunger Games is the first in a series of books about Katniss Everdeen, a young 16 year old girl living in the post apocalyptic District 12 of what used to be North America.  The book and its sequels, Catching Fire, and Mockingjay, were written by superb story-teller, Suzanne Collins (The Underland Chronicles). The plot is reminiscent of a combination of Shirley Jackson's short story, The Lottery and Richard Connel's The Most Dangerous Game, but Collins makes the tale all her own by deft plot shifts and sympathetic depictions of the main love interests: Katniss and Peeta.


The book describes a future totalitarian state that suppresses rebellion, by holding a annual lottery that pits one male and one female from each district in a fight to the death against all other combatants. The masters of the game throw obstacles at the chosen ones that become more and more cruel and insurmountable.  Initially, Katniss' name is not chosen to battle in the Hunger Games, but soon fate plays its hand and Katniss must volunteer or lose her sister, and then the suspense begins.

The plot has many twists and turns that keep the reader from ever putting down the book until it is read cover to cover.  The deeper themes of the novel challenge the reader to examine the morality of war, conscription, and human greed and cruelty.  We are asked to think about what loyalty, love, and friendship mean in a world ruled by selfishness and hate.

My Teen Topix highly recommends The Hunger Games to all our readers from teen to adult.

Author Suzanne Collins

Fans of The Hunger Games will be pleased to know that it is currently being made into a major motion picture staring Jennifer Lawrence of last year's Winter's Bone, who also can be seen in the latest X-Men film.  The wonderfully talented actress at 21 is a bit older than the 16 year old Katniss, but we feel that Ms. Lawrence has the range as an artist to bring the heroic Katniss to life.

Jennifer Lawrence

Jennifer as Katniss trying to survive

Katniss and Gale played by Liam Hemsworth 

Josh Hutcherson is cast as Peeta

It's a little difficult to picture the stunning 

Elizabeth Banks as the officious Effie Trinket,

but she's a terrific actress, especially in comedic roles

Gary Ross who wrote and directed the wonderfully quirky Pleasantville will 

write and direct The Hunger Games, which seems like a fantastic choice.

Other actors in the film include the talents of Stanley Tucci, Woody Harrelson, and Donald Sutherland.  So you know that My Teen Topix will be covering this one, when it debuts in 2012. Stay tuned!

Oran Utan Republik Foundation Raises Funds To Protect The Sumatran Orangoutangs

The population of Sumatran Orangoutangs has been cut in half over the last 17 years, while their natural habitat has been devastated by deforestation due to the greed of Palm Oil Plantation owners.  The Orangoutang in danger of being the first great ape to become extinct in the wild.

Deforestation & Palm Oil by Films4

The rapid decline in the Orangoutang population is a direct result of deforestation and the illegal poaching of the species by criminals to sell as pets.  There is a frightening demand for young Orangoutangs for pets across the world, despite the fact that owning, capturing, or killing these animals is illegal.  Often, to capture a baby ape, its mother must be killed, and without the mother, the dependent babies rarely survive their capture.

Six years ago, The Oran Utan Republlik Foundation was formed to  combat this disgusting trend and to help protect the Orangoutang population.  This August, Debi Derryberry (the voice of of TV's Jimmy Neutron) hosted a fund raising event at her home, to increase awareness of the foundation, and the primates' plight.  Over 200 guests attended, including Emmy award winning actor and activist, Ed Begley, Jr.; the legendary Door's drummer, John Densmore; Super 8's Gabriel Basso; weatherman Fritz Coleman; and SpongeBob Squarepants, in real life, the delightful Tom Kenney.

St. Elsewhere's Ed Begley, Jr,. a dedicated 

activist for the foundation and other worthwhile 

causes, hosted the event

Fritz Coleman interviewed Gabriel Basso

ONEHOONEHOPE Foundation CEO, Jake Kloberdanz made an impassioned plea for

each of us to join the movement and  make a change

Voice artist Debi Derryberry aka Jimmy Neutron welcomed guests

 to her beautiful home for the fundraiser

The Doors John Densmore played drums 

and encouraged the guests to join in the singing

Tom Kenney aka Spongebob Squarepants 

made 12 year old Oliver Peake's night! 

A check for $8K was given to the Foundation

Gary Shapiro, President and Co-Founder of the Orangutan Republik Foundation, 

chats with Fritz Coleman

Christine Peake of the peakPRgroup and Ed Begley, Jr.listen to 

Jake Kloberdanz's speech

The evening consisted of music, Balinese dance,  wonderful treats donated from Nuubia Chocolate, other sponsors included the ONEHope Foundation, smartwater, Honest Tea; and Coca-Cola. Santa Monica's Christine Peake and the peakPRgroup also donated their efforts for the cause.

photos: ACMA photography