Public invited to ‘Extreme’ viewing party Dec 31, 2008
Jean and Steve Grys have opened their home to more than 250 foster children over the last two decades, and Jake, who has osteogenesis imperfecta, or brittle bone disease, and dwarfism, is their adopted son. The Grys family was chosen by the popular TV show to receive a new, custom-built house with special accommodations for 8-year-old Jake so he could do simple tasks such as turn on lights, dress himself, go to the bathroom, get a drink of water, escape a fire and many other things that most... (Pekin Times, IL)
Full speed ahead for man with bone disease Dec 15, 2008
The 44-year-old was born with osteogenesis imperfecta ... It is a genetic disorder, characterized by bones that break easily, often from little or no apparent cause, according to the Osteogenesis Imperfecta Foundation Web site. (Sioux City Journal, IO)
Fragile 5-Year-Old Battles Bone Disorder Nov 4, 2008
Before the girl was born, she was diagnosed with a severe form of a genetic disorder called osteogenesis imperfecta, also known as brittle bone disease ... Children with disorders like osteogenesis imperfecta come to the clinic from 28 states and five different countries to seek breakthrough treatments. (Click2Houston, TX)
Brittle bone disease Nov 2, 2008
Osteogenesis imperfecta, U.S. National Library of Medicine, Reviewed November 2007 ... Facts about Osteogenesis Imperfecta, Osteogenesis Imperfecta Foundation, Retrieved October 2008. (The Star Online, Malaysia)
Against all odds Nov 2, 2008
Lee has a genetic disorder, osteogenesis imperfecta (which means imperfect bone formation), which renders his bones very fragile ... This illustration shows a broken femur (thigh bone) of a patient with osteogenesis imperfecta ... Like his grandfather, father and uncle, Lee was diagnosed with osteogenesis imperfecta type I at birth. (The Star Online, Malaysia -- News)
Therapist in awe as dream comes true Oct 29, 2008
Jake was born with osteogenesis imperfecta, better known as brittle bone disease. The idea to submit an application to the ABC show just clicked and ever since, DeLost has sent in repeated submission videos and garnered letters of support from everyone she could think of. (Pekin Times, IL)
Public's eyes on ‘Extreme' show project Oct 23, 2008
EMHE Senior Producer Diane Korman said the reason the Grys were chosen is two-fold: Jake's condition of osteogenesis imperfecta (better known as brittle bone disease) means his current home is unsafe and design and new technology could save his life. Additionally, she said Steve and Jeannie Grys are heroes for the community impact they've had as foster parents and through their involvement with Special Olympics. (Pekin Times, IL)
All for Jacob! Makeover is boy's dream come true Oct 23, 2008
It will be custom-built with special accommodations for Jacob, who suffers from osteogenesis imperfecta, better known as brittle bone disease, and dwarfism. Brittle bone disease causes Jake to break bones during activities that wouldn't even cause a bruise on most people pushing an elevator button, or rubbing up against a door frame. (Pekin Times, IL)
‘EXTREME' GOOD NEWS for Pekin family Oct 22, 2008
Jacob was born with osteogenesis imperfecta, which is better known as the brittle bone disease. It was a therapist from Easter Seals who first encouraged the family to apply to the show, and helped them realize that with the proper modifications, they could create a home that would allow Jacob to live independently when he is older. (Pekin Times, IL)
Losing Our Way Without Maps Aug 24, 2008
He is believed to have suffered from a condition called osteogenesis imperfecta. . (San Francisco Chronicle -- Travel)
Tokay High School student Jeremy Hixson attending a leadership conference in Sacramento Jul 30, 2008
Hixson, who has osteogenesis imperfecta, a disease that makes his bones brittle, joined 55 other students with disabilities in attendance at the week-long Youth Leadership Forum at California State University, Sacramento. For one week, the students stay in the dorms and participate in leadership workshops and team-building activities. (Lodi News Sentinel, CA)
A heartwarming story for Fathers Day Jun 12, 2008
Michael and his six-year-old son Patrick, who has osteogenesis imperfecta, play with a ball in their home near Rossville ... Although he is a little bundle of energy, always ready with a joke, or a unique comment, he has a rare bone disease called osteogenesis imperfecta, or OI. ... According to the Osteogenesis Imperfecta Foundation website, OI is a genetic disorder characterized by bones that break easily, often from little or no apparent cause. (WWalker County Messenger, GA)
Photo Gallery May 17, 2008
The fact that she does it all from a wheelchair (except swimming) may be surprising enough - but the fact that she does it while battling osteogenesis imperfecta (OI) is staggering. On May 1, Seelenfreund signed a letter of intent to play wheelchair basketball for the University of Alabama. (Union City Reporter, NJ)
SHE'S GOT GAME May 16, 2008
A West Orange resident, Seelenfreund, 17, was born with a moderate form of osteogenesis imperfecta, also known as brittle bone disease, and has used a wheelchair since age 5. Because of her osteogenesis imperfecta, a genetic condition that cannot be treated, Seelenfreund's body produces abnormal collagen. (NJ.com)
Mementos help cope with baby's death May 2, 2008
Four months into her pregnancy, her baby was diagnosed with osteogenesis imperfecta - a brittle-bone condition that left most of the child's developing skeleton shattered. McBride was told Peyton Isabella would not survive, and labor was induced. (Yuma Daily Sun, AZ)
Benefit today Apr 19, 2008
Special Bones Foundation was created to raise money to support research work at the Cleveland Clinic's Lerner Research Institute of osteogenesis imperfecta, commonly known as brittle bones disease ... For information on osteogenesis imperfecta, go online to oif. (Cleveland.com)
Family adjusts to life with rare 'brittle bones' disease Apr 18, 2008
UPDATED: 08 :06 a.m. EDT, April 18, 2008. Breaking News from The Plain Dealer. (Cleveland.com -- News)
Child Abuse Diagnosed by X-ray Alone Mar 5, 2008
Dr. Paterson hypothesized that these babies had a temporary form of brittle bone disease, different from osteogenesis imperfecta and other known causes producing weak bones and multiple fractures. Dr. Marvin Miller, professor of Pediatrics and Obstetrics and Gynecology at Wright State School of Medicine in Dayton, Ohio, recently reported 65 infants with a similar pattern of medical findings in the journal "Medical Hypotheses" (2005 65, 880-886). (Newsmax)
Woman May Be Smallest Ever To Give Birth Mar 4, 2008
Woman Born With Osteogenesis Imperfecta ... Herald was born with osteogenesis imperfecta, reported NBC Cincinnati affiliate WLWT-TV. Her 16-month-old daughter, Katira, also suffers from the genetic disorder that causes bones to break easily. (NBC4.tv, CA)
Woman Gives Birth to Baby Nearly Her Own Size Mar 1, 2008
Herald, 33, was born with osteogenesis imperfecta, a genetic disorder that causes bones to break easily. She gave birth five weeks ago to baby Makaia, who is unaffected by the disorder and will grow to an average size. (Fox News)
New Baby Nearly Mother's Own Size Feb 29, 2008
"I'm 28; inches, head to heel," said Herald, who was born with osteogenesis imperfecta. Herald's 16-month-old daughter, Katira, also suffers from the genetic disorder that causes bones to break easily, but her youngest daughter, Makaia, is expected to grow to average height. (Click2Houston, TX)
Boy honored with Heart party Feb 28, 2008
Henderson, a wheelchair-bound boy from Brookhaven, suffers from osteogenesis imperfecta, also known as brittle bone disease, a genetic defect that causes weakness in the bones and makes them prone to fracture. The rare condition has caused Henderson, the son of Willie and Victoria Henderson, to miss out on many of the tumbling affairs of childhood. (Brookhaven Daily Leader, MS)
Bone disease could be treated in utero Feb 1, 2008
Scientists have successfully used stem cells to treat unborn rodents suffering from the debilitating condition known as osteogenesis imperfecta (OI). The work raises hopes of potential in utero treatments for the lifelong inherited disease as well as other disabling conditions like muscular dystrophy and congenital brain diseases. (The Age)
Stem Cell Treatment For Brittle Bones In The Womb Jan 31, 2008
Brittle bone disease or Osteogenesis imperfecta* (OI), as the inherited disease is known, affects babies whilst they are inside their mother's womb ... Dr Yolande Harley of charity Action Medical Research, which funded the project, said: "Professor Fisk's work is a real breakthrough. It suggests that if stem cells could be successfully transplanted before a baby with OI is even born, it could mean a significant improvement in the child's health and quality of life. The team studied mouse models... (Science Daily)
* Rare condition can't stop taxi driver Dec 21, 2007
Cheng, who suffers from osteogenesis imperfecta, announced yesterday that he will donate 5 percent of his income to a local association helping patients with the rare disease and called on more people to help raise funds for the organization ... Cheng suffers from osteogenesis imperfecta (OI), a rare genetic condition that leaves the bones of sufferers deformed and brittle. (Taipei Times, Taiwan -- World)
Police, firefighters escort Santa to home Dec 6, 2007
Jake Grys, 7, who has osteogenesis imperfecta - the "brittle bone" disease - was sitting at home Tuesday night when flashing red lights streamed through his front window. Then, with a knock at the door, Santa Claus walked in caring a big red bag full of gifts for Jake and his older siblings. (Pekin Times, IL)
Tight budget, no room for toys Dec 4, 2007
She's also around after school to keep a careful eye on Jessie, who has the same osteogenesis imperfecta, or brittle bone disease, that Mr. Hilson does. Because of the disease, Jessie broke her right leg at age 2 after a cousin tried to teach her a ballet move. (Pittsburgh Post-Gazette, PA)
PSL dad won't face child abuse charge Nov 29, 2007
He said investigation by medical professionals, lawyers and the child's mother helped build the defense that the baby suffers from a genetic disorder called osteogenesis imperfecta. This disorder is characterized by bones that break easily, often from little or no apparent cause, according to the Osteogenesis Imperfecta Foundation ... Assistant State Attorney Hilary Hunt said it was her understanding that osteogenesis imperfecta is difficult to definitively diagnose, so she's not certain the boy... (The Palm Beach Post)
* Disabled groups speak out against city bus fee hikes Oct 19, 2007
"Fu-Kang Bus is a great transportation tool for the disabled, but the supply can't meet our demand. The increase in the fare may make the situation worse," Lin Yu-chih (L), founder of the Osteogenesis Imperfecta Association said at the Taipei City Council. Shih Yung-mu (Ilp), a member of Association of Spinal Cord Injury in Taipei, complained about the bus policy, which required the disabled to reserve the bus at least three days in advance, and called on the city government to... (Taipei Times, Taiwan -- World)
Read more. . Sep 28, 2007
Osteogenesis Imperfecta. Post-traumatic deformities. (Williston Daily Herald, ND)
Lawrenceburg event raises $25,000 to combat rare bone disorder Sep 13, 2007
Mary Alice Birdwhistell s sorority sisters from Georgetown College support her and fellow brittle bones patient Adam Ayers as they lead Kentucky s first Wheel and Walk for Osteogenesis Imperfecta, held Saturday at American Legion Park in Lawrenceburg ... Kentucky s first fundraising and awareness event for the Osteogenesis Imperfecta Foundation, which took place last Saturday at Lawrenceburg s American Legion Park, was a huge success, according to event organizer Martha Birdwhistell. (Lawrenceburg Anderson News, KY)
CHS graduate to meet Dale Jr. Sep 6, 2007
She was born with a broken arm and leg, after being diagnosed with osteogenesis imperfecta rittle bone disease while still in the womb. Over the years, Wickard has endured the pain of almost 100 fractures and numerous surgeries to fix the damage and insert rods to reinforce her skeleton. (Carlisle Sentinel, PA)
Teens spend summer in community-building projects Aug 26, 2007
Brittle bone disease, or osteogenesis imperfecta, is a rare genetic disorder that causes bones to break easily due to low levels of collagen, a protein that connects body tissues, bones and muscles. In J.J.'s case, he breaks an average of six or seven bones each year, including once breaking his shoulder while rolling over in bed. (Pittsburgh Post-Gazette, PA)
Sheriff's Department joins Be A Buckle Buddy! program Jul 26, 2007
Or a child with brittle bone disease (osteogenesis imperfecta) may benefit from a child restraint made with extra padding. Children's Hospital of Illinois can provide educational training to Level II and Level III nurseries, pediatric specialists, parent groups and early-intervention providers, as well as other certified child-passenger-safety technicians. (Canton Daily Ledger, IL)
Toddler abuse case has yet to be fully closed Jul 11, 2007
But doctors who testified on behalf of Julia's parents said the girl suffered from osteogenesis imperfecta, also known as the "brittle bone" disorder ... The ruling ignored the testimony of a Boston radiologist who specializes in child abuse cases and has treated children with osteogenesis imperfecta. (Albany Times Union)
'Silent' brittle bone genes found Jun 30, 2007
Classic osteogenesis imperfecta (OI) is caused by a dominant gene, meaning anyone who inherits a copy will suffer from fragile bones - often fatally ... A spokeswoman from the Osteogenesis Imperfecta Foundation ... " Suspected abuse There have been cases where babies suffering from milder forms of brittle bone disease have been taken into care - because the symptoms resemble those of child abuse. Dr Marini said it was very unlikely that any suspected child abuse cases might instead be explained... (BBC News -- Health)
Last obstacle falls for Saratoga County girl, parents Jun 9, 2007
Lawyers for the family argued that Julia suffered from a form of osteogenesis imperfecta, also known as brittle bone disease. "It's over, over, over," said Terry Kindlon, law partner of Laurie Shanks, who represented Julia's parents. (Albany Times Union)
Saratoga tug of war continues over custody of child Jun 6, 2007
Experts hired by Julia's family testified that she suffered from a form of osteogenesis imperfecta, or brittle bone disease. The disease is a genetic mutation linked to type 1 collagen, a protein that acts as the scaffolding on which calcium is layered in the bone-making process, said Dr. Brendan Boyce, professor of pathology and laboratory medicine at the University of Rochester Medical Center. (Albany Times Union)
Life-Ending Bill Under Fire At Capitol May 8, 2007
"I was born with a disability called osteogenesis imperfecta and physicians have told my mother and both my parents, that by the age of 13, I would probably die," Mills-Hovius said. The bill faces the assembly's appropriations committee later this month. (NBC 11, CA)
A dance of life May 5, 2007
J. Perkel, "Osteogenesis imperfecta gene identified," The Scientist, October 19, 2006. Irene Eckstrand. (The Scientist)
Daily pill to beat genetic diseases Apr 26, 2007
Is osteogenesis imperfecta one of the diseases this treatment could improve. Mike Condra, Tracy, CA. (Times Online)
Business, divorce: strange bedfellows Feb 12, 2007
But the plan never panned out because the couple's son, Jeffrey, who was born with osteogenesis imperfecta, or brittle-bone disease, badly fractured his leg in three places, she said. Donna Black said her husband urged her to stay in Tennessee so their son could be treated by a specialist there. (San Diego Union-Tribune)
Children's Drug Trial Program Gives Boost to Medicine, Profits Feb 7, 2007
The nine categories of selected medications included drugs for depression and generalized anxiety disorder, high blood pressure, asthma and allergy, osteogenesis imperfecta, bacterial infection, gastroesophageal reflux (GERD), type 2 diabetes, attention-deficit hyperactivity disorder and a medication used on difficult-to-treat tumors. The average cost or "cash outflow" needed for the pediatric studies was $10. (Health-Finder)
Handicapped Van Stolen, Hurts Woman's Business Jan 27, 2007
She was born with Osteogenesis Imperfecta, a genetic disease otherwise known as brittle bone disease. Over her 38 years she has had more than 300 fractures. (WCCO.com, MN)
Fatal brittle bone gene is found Jan 1, 2007
All forms of the condition, also called Osteogenesis Imperfecta, weaken bones causing frequent fractures ... This discovery provides a basis for counselling families that have lost a child to this previously unexplained form of Osteogenesis Imperfecta ... Duane Alexander, director of the National Institute of Child Health and Human Development, said: "This discovery provides a basis for counselling families that have lost a child to this previously unexplained form of Osteogenesis Imperfecta.... (BBC News -- Health)
