Recent Event Highlights: Kira will walk tall thanks to appeal - The Star, Kira will walk tall thanks to appeal, Apert Syndrome Awareness, "Torey's Distraction" documentary stars Woodrow Wilson High student, April 10, 2010 Lili Rachel Smith A movement is born......mp4, Torey's Distraction Trailer, and 68 more...
Created by dipity on Jan 29, 2009
Last updated: 01/08/12 at 11:36 PM
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The StarKira will walk tall thanks to appealThe StarKira Yates, aged six, from Belton, Doncaster, was born a rare condition called Apert Syndrome, which causes malformations of the skull, face, hands and feet. Because one of her feet is bigger than the other, Kira needs specially-made shoes and has ...and more »
http://news.google.com/news/url?sa=t&fd=R&usg=AFQjCNF9Lla6HuxSAkq_zcpRIaBrujVjxQ&url=http://www.thestar.co.uk/lifestyle/the-star-says/kira_will_walk_tall_thanks_to_appeal_1_4095263
Excerpt
...through The Star’s 12 Days of Christmas appeal. Kira Yates, aged six, from Belton, Doncaster, was born a rare condition called Apert Syndrome, which causes malformations of the skull, face, hands and feet. Because one of her feet is bigger than the other,...
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Sheffield Telegraph
Related Topics
http://www.sheffieldtelegraph.co.uk/kira_will_walk_tall_thanks_to_appeal_1_4095263
just a wee bit 'o' info on a medical condition called apert syndrome "hence the title"
Zoey has a rare syndrome called Apert Syndrome. Here is a little video that catches a glimpse of her journey from very sick little baby to happy teenager.
this is a song i wrote for my sister. she has Aperts Syndrome. The easiest way to explain it is that there was a problem when her DNA was put together and this caused her to develop wrong. she was born with webbed hands and feet, her skin was purple because she couldn't breath properly (this is how she got the name Violet) and her scull didn't have enough room for the brain to grow. She has been through countless surgeries and faced hundreds of pointing fingers and laughs from people who don't take the time to understand what an amazing person she is. Every day that she is in my life is a blessing (even when she annoys me to no end). Even though she looks different on the outside shes just like a normal person. I can't imagine what or who i would be without her in my life. I love you Violet.
"Torey's Distraction" is a movie about 17-year-old Woodrow Wilson High School junior Torey Harrah and her lifelong struggle with a rare, genentic craniofacial abnormality called Apert Syndrome. She and casting director/documentarian Tisha Blood talk to us about the project. March 2010.
Apert Syndrome
Lili Rachel Smith was born with a physical adversity which she overcame, surgery after surgery, day by day, hour by hour! Yet to those who participated with her in life, it was not laborious, rather an energetic embrace of lifes offerings, in a manner that belied any inkling of difficulty. Lili was the one who since her birth endured the physical setbacks of the rare Apert syndrome, yet it was those, who through ignorance and perhaps fear, suffered the worst malady by failing to overcome the shallowness of intolerance that robbed them of the opportunity to step beyond differences.
Aiden, who was born with Apert's syndrome, doing his put'em up dance.
Children's Craniofacial Association Retreat Reel was created by a donation from the Torey's Distraction Fund. The CCA is dedicated to improving the quality of life for people with facial differences and their families. Nationally and internationally, CCA addresses the medical, financial, psychosocial, emotional, and educational concerns relating to craniofacial conditions. CCA's mission is to empower and give hope to individuals and families affected by facial differences. To find out more about the Torey's Distraction Fund, please visit toreysdistraction.com To find out more about the Children's Craniofacial Association, please visit http
In 1993, Torey Harrah was born with Apert syndrome: a rare genetic condition marked by a prematurely fused skull resulting in skeletal mutation, severe craniofacial anomalies and potential lifelong brain damage. Filmmaker Tisha Blood follows Torey and other children like her throughout 10 years providing an intimate glimpse into the transforming powers of science, family, humor, hope and compassion.
After 11 grueling weeks of training, Ms. Nancy's Sunday 11AM Old Town School of Folk Music Pre-Ballet dancers hit the OTS stage for a moving expression of "Frosty the Snowman." D shared the stage with her BFF, Sabine, and 3 other girls! Caption note: At the end, D runs up to her friend, Linda, and asks: "Can I hold your phone now?" Thanks to everyone who turned out for the show!
Excerpt
...and touching the lives of others. She was a wonderful person who will be greatly missed." Born with a rare condition, Apert's syndrome -- a congenital disorder characterized by malformations of the skull, hands and feet -- Lili Smith required extensive and...
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San Francisco Chronicle
http://feeds.sfgate.com/click.phdo?i=260902b0a8999563a0f0641ad80e740e
92-Minute Documentary by Tisha Blood. The soul is immutable. No matter what face we are born with or put on for the day the soul is intrinsic and does not change. We all have a reason for being. The film begins in 1999 as Torey Harrah and her family prepare for a surgery that has only been performed 18 times in the world. She is about to get a new face. Torey was born with Apert Syndrome a rare genetic condition that causes a skeletal mutation and a cranial-facial anomaly. Documented over 10 years the film also includes the stories of two other little girls with Apert Syndrome at different stages of their treatment and growth. With love and humor the film allows a profound view into a world we would normally avert our eyes from, out of politeness or fear. Their stories challenge the way we view the world, as well as force us to examine our own values and consider what is really important in life.
Dominika's 1st Speech @ Chicago's 6th Annual Disability Pride Parade, July 25, 2009: She said, "Hello Chicago! I'm disabled & proud!" ...and then I translated for people that don't understand the toddler accent!
Headlines Teenagers at the Pioneer Centre, Kidderminster 3-5 July. Can't believe I risked falling in that dirty water! Headlines supports children and young people with craniofacial conditions including Apert, Crouzon, Muenke, Pfeiffer and Saethre-Chotzen Syndromes. I have Apert Syndrome. www.headlines.org.uk
Headlines Teenagers at the Pioneer Centre, Kidderminster 3-5 July. Terry ran in and rocked the boats so half of us did get to swim, but the guy who took over the camera had his finger over the lens for that bit! Headlines supports children and young people with craniofacial conditions including Apert, Crouzon, Muenke, Pfeiffer and Saethre-Chotzen Syndromes. I have Apert Syndrome. www.headlines.org.uk
Headlines Teenagers at the Pioneer Centre, Kidderminster 3-5 July. Last year I only climbed my own height - it was raining and slippery. This year I climbed to the top. My climb is 1minute 30 seconds into this movie. Headlines supports children and young people with craniofacial conditions including Apert, Crouzon, Muenke, Pfeiffer and Saethre-Chotzen Syndromes. I have Apert Syndrome. www.headlines.org.uk
Speaking at Calais
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...the presence of a single disordered gene in one of the child's parents, leads to rare conditions such as Crouzon syndrome, Apert syndrome and Pfeiffer syndrome. Between 10 and 50 children a year are born in the UK with any one of these conditions. Treatment...
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Guardian Unlimited
http://www.guardian.co.uk/society/2009/jan/25/great-ormond-street-nhs
Excerpt
...the presence of a single disordered gene in one of the child's parents, leads to rare conditions such as Crouzon syndrome, Apert syndrome and Pfeiffer syndrome. Between 10 and 50 children a year are born in the UK with any one of these conditions. Treatment...
Source Info
Guardian Unlimited
Related Topics
http://www.guardian.co.uk/society/2009/jan/25/great-ormond-street-nhs
Excerpt
...after he spent Christmas in hospital for the second successive year. Both Kaddy and Elijah, from Selly Oak, were born with Apert Syndrome, a genetic condition that affects the growth of bones in the hands, feet, and skull. Although not life-threatening, the...
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The Birmingham Mail
http://www.birminghammail.net/news/birmingham-news/2009/01/01/selly-oak-mother-wants-to-raise-10-000-to-take-poorly-son-on-florida-holiday-97319-22584785/
Just 24 hours after shunt revision surgery, Dominika feels much better and made a video to show her friends and family! Enjoy this now because we will probably take it down after a week or so...
Jack walking on an inclined uneven surface. This one is for the physical therapists.
Dominika got a pink tutu for her 3rd birthday that was a big hit! She is having fun dancing in the mirror. This video isn't as spontaneous as her first tutu mirror dance but we will upgrade it if we can catch a better one on video...
Excerpt
...other researchers have suggested patterns between older fathers and increased chances of bipolar disorder, dwarfism and Apert syndrome - whose unlucky sufferers have a malformed skull and webbed hands and feet, among other disfigurements. A report in 2006...
Source Info
Guardian Unlimited
http://www.guardian.co.uk/lifeandstyle/2008/nov/16/fertility-father-late-old-sperm
The story of how we met and our relationship so far.
Crouzon Syndrome is a syndrome that affects the growth of the skull and face. It occurs in 1 in 25 000 births. There are specific characteristics that people born with Crouzon Syndrome have.
When you see a face, what do you see? A video on having a craniofacial anomaly - Crouzon Syndrome
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...has undergone 12 surgeries, first to separate his fingers and toes, then to begin reshaping his skull and facial features. Apert Syndrome, one type of craniofacial malformation, occurs once in every 60,000 births. In Dallas, Texas, the Swiharts found hope...
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Canton Repository
http://www.cantonrep.com/index.php?ID=426509
kayla just loves the water!!!
Brian Peppers (born November 1, 1968) is a resident of Whitehouse, Ohio (a suburb of Toledo), who became the subject of an Internet meme that originated in 2005 concerning the circulation of his photograph, obtained from the Ohio Electronic Sex Offenders Registry[1]. The appearance of the photograph led many viewers to suggest that it was faked. Snopes investigated the case and determined it was most likely true. They also found high school yearbook photos of Peppers.[2] The Ohio Attorney General's office told them "This is an accurate photo of this offender." Snopes suggests that Peppers' unusual appearance may be due to malformation of the cranium caused by a branchial arch condition such as Apert syndrome or Crouzon syndrome. Peppers was sentenced to 30 days in jail with 5 years probation thereafter in 1998 for the crime of "Gross Sexual Imposition"[3]. Gross Sexual Imposition is defined as[4] unwilling sexual contact with one who is not one's spouse. It was said on a YTMND that he was sentenced for allegedly groping a nurse, but he was really just trying to get her attention. Whether this letter is completely true or not is yet to be known, but many people believe it to be true The exact Internet forum where the mocking of the image originated is unknown. It is however known that his image was entered on Hot or Not.[5] The image was later parodied several times on the web site YTMND and is regularly referenced on Fark. The operators of the Ohio eSORN do not appreciate ...
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...hereditary non-polyposis colorectal cancer (MLH1, MSH2, MSH6, and PMS2), retinoblastoma (RB1), Costello syndrome (HRAS), Apert syndrome (FGFR2) and reports of multiple-case TCCUT families. Our literature review revealed only 32 reports of multiple-case TCCUT...
Source Info
Medical News Today
http://www.medicalnewstoday.com/articles/115981.php
Excerpt
...syndrome, which causes craniofacial defects and fusion of the digits, is somewhat oddly behaved as a genetic disease. It can be inherited as an autosomal dominant disorder, but many of the cases are sporadic. Almost all of these sporadic cases can be traced...
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Ars Technica
http://feeds.feedburner.com/~r/arstechnica/journals/~3/337107195/sporadic-genetic-defects-may-spring-from-germ-cell-selection
Excerpt
...errors simply occurred more frequently. While the researchers have seen this before, this study is the first to test both Apert's syndrome mutations in testes from both young and old individuals in this way. Comparing computer models with observed data, the...
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News-Medical.net
http://www.news-medical.net/?id=39986
kayla walking to liz ready to go
early stages of kayla walking
Excerpt
... Jess says she wants to 'look normal' I am different from my family because I have a rare condition called Apert Syndrome. I don't know why I was picked out of the crowd and given this condition, as it affects only one in 70,000 people...
Source Info
BBC News
http://news.bbc.co.uk/go/rss/-/1/hi/health/7476920.stm
إن لله فى خلقه شئون متلازمة ابيرت Apert`s Syndrome - متلازمة كروزون Crouzoun Syndrome نقلاً عن الجزيرة الوثائقية -- ثقافة. سيتم نشرها ان شاء الله فى تسعة اجزاء.تابع ما بعده... مواضيع ذات صلة : http://vb.arabsgate.com/showthread.php?t=405273 http://www.gulfkids.com/ar/index.php?action=show_res&r_id=32&topic_id=577 http://www.gulfkids.com/ar/print.php?page=topic&id=577 haelfeshay@gmail.com
إن لله فى خلقه شئون متلازمة ابيرت Apert`s Syndrome - متلازمة كروزون Crouzoun Syndrome نقلاً عن الجزيرة الوثائقية -- ثقافة. سيتم نشرها ان شاء الله فى تسعة اجزاء.تابع ما بعده... مواضيع ذات صلة : http://vb.arabsgate.com/showthread.php?t=405273 http://www.gulfkids.com/ar/index.php?action=show_res&r_id=32&topic_id=577 http://www.gulfkids.com/ar/print.php?page=topic&id=577 haelfeshay@gmail.com
إن لله فى خلقه شئون متلازمة ابيرت Apert`s Syndrome - متلازمة كروزون Crouzoun Syndrome نقلاً عن الجزيرة الوثائقية -- ثقافة. سيتم نشرها ان شاء الله فى تسعة اجزاء.تابع ما بعده... مواضيع ذات صلة : http://vb.arabsgate.com/showthread.php?t=405273 http://www.gulfkids.com/ar/index.php?action=show_res&r_id=32&topic_id=577 http://www.gulfkids.com/ar/print.php?page=topic&id=577 haelfeshay@gmail.com
إن لله فى خلقه شئون متلازمة ابيرت Apert`s Syndrome - متلازمة كروزون Crouzoun Syndrome نقلاً عن الجزيرة الوثائقية -- ثقافة. سيتم نشرها ان شاء الله فى تسعة اجزاء.تابع ما بعده... مواضيع ذات صلة : http://vb.arabsgate.com/showthread.php?t=405273 http://www.gulfkids.com/ar/index.php?action=show_res&r_id=32&topic_id=577 http://www.gulfkids.com/ar/print.php?page=topic&id=577 haelfeshay@gmail.com
إن لله فى خلقه شئون متلازمة ابيرت Apert`s Syndrome - متلازمة كروزون Crouzoun Syndrome نقلاً عن الجزيرة الوثائقية -- ثقافة. سيتم نشرها ان شاء الله فى تسعة اجزاء.تابع ما بعده... مواضيع ذات صلة : http://vb.arabsgate.com/showthread.php?t=405273 http://www.gulfkids.com/ar/index.php?action=show_res&r_id=32&topic_id=577 http://www.gulfkids.com/ar/print.php?page=topic&id=577 haelfeshay@gmail.com
إن لله فى خلقه شئون متلازمة ابيرت Apert`s Syndrome - متلازمة كروزون Crouzoun Syndrome نقلاً عن الجزيرة الوثائقية -- ثقافة. سيتم نشرها ان شاء الله فى تسعة اجزاء. تابع ما بعده... مواضيع ذات صلة : http://vb.arabsgate.com/showthread.php?t=405273 http://www.gulfkids.com/ar/index.php?action=show_res&r_id=32&topic_id=577 http://www.gulfkids.com/ar/print.php?page=topic&id=577 haelfeshay@gmail.com
My full life testimony sorry about before it got cut off a little bit but this is the full testimony thanks guys.
DADDY
this is her mom Leonor Ramallosa Evangelista appealing to the viewers of this website to pls help this child raise a fund for his operation which will take place as soon as we have the enough money needed for his operation we have a big hearted team of doctors willing to help us headed by Dr.Mario Esquillo. so many things to be done on him but i wanted tolet his teeth and cleft pallate be done 1st upon doktors advice. so pls help us this plan to push trough.thank you to everyone.U CAN CONTACT US AT THIS NO.5418202 AND THIS MOBILE NO.09065820806
Excerpt
...syndrome is a genetic disease. It can be inherited, or it may occur without a known family history. It is characterized by premature closure of the seams between the skull bones, which results in a peaked head and an unusual facial appearance. Apert syndrome...
Source Info
How Stuff Works
http://healthguide.howstuffworks.com/apert-syndrome-dictionary.htm
Excerpt
Apert syndrome is a genetic disease. It can be inherited, or it may occur without a known family history. It is characterized by premature closure of the seams between the skull bones, which results in a peaked head and an unusual facial
Source Info
How Stuff Works
Related Topics
http://healthguide.howstuffworks.com/apert-syndrome-dictionary.htm
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