Parents struggle to raise funds for children with special needs Sep 10, 2008
Josh and Leigh Fultz of Navasota is one of the couples involved, though their daughter Jadyn, who has CHARGE syndrome, an extremely complex syndrome that involves extensive medical and physical difficulties, is only 18 months old and is not enrolled at the school yet. We have to be the best advocates for our children and I want to make sure my daughter is given every opportunity other children have. (Navasota Examiner, TX)
Gaps found in care for deafblind children Jun 24, 2008
Despite all these symptoms, it was only when he was a year old that he was diagnosed with Charge syndrome - a serious congenital condition that affects about one in every 10,000 people. And it took over 15 months to diagnose his profound deafness. (Guardian Unlimited -- Society)
Montreal doctor uses Botox to treat newborn Mar 20, 2008
In what is being described as the first case anywhere of Botox being used on a newborn, a Montreal doctor injected minute doses of the botulinum toxin into the salivary glands of a 21/2-month-old infant suffering from CHARGE syndrome, a rare but life-threatening congenital problem that can cause multiple birth defects including difficulty swallowing. Saliva ends up pooling in babies' throats and filling their lungs. (Canada.com)
Botox may help newborns Mar 18, 2008
WASHINGTON: Woman use to it get rid of those pesky wrinkles, but a doctor at the Montreal Children's Hospital of the McGill University Health Centre has found another use for Botulinum toxin aka Botox, saving newborns from the Charge Syndrome. Charge Syndrome includes a variety of birth defects in different organs, such as the heart, eyes or ears, but it also affects the salivary glands ... Newborns with Charge Syndrome are hyper-stimulated and secrete excessive fluids that are discarded into... (India Times, India)
Botox for newborns Mar 18, 2008
Now, thanks to Dr. Sam Daniel, Associate Director of Research of the Otorhinolaryngology Division at the Montreal Childrens Hospital of the McGill University Health Centre, this protein has become an effective method to save newborns suffering from CHARGE Syndrome from having to undergo devastating tracheotomies ... CHARGE Syndrome is rare, but it can become life-threatening in its most severe form. (EurekAlert!)
Josh, Leigh, Jadyn ~ A lesson in love Oct 13, 2007
Soon thereafter, Jadyn was diagnosed with CHARGE syndrome ... According to the CHARGE syndrome Web site, it is an extremely complex syndrome, involving extensive medical and physical difficulties that differ from child to child ... Babies born with CHARGE syndrome are often born with life-threatening birth defects, including complex heart defects and breathing problems. (Navasota Examiner, TX)
Family starts golf tournament to benefit Kosair Charities Aug 30, 2007
Shawn and Raymond Herrick named the event after their 2-year-old son, Cole, who has a pattern of birth defects called Charge Syndrome. Kosair Charities has provided support to the family since Cole's birth. (Louisville Business First, KY)
Medford cop helps save infant Nov 30, 2006
Alex has CHARGE Syndrome, a genetic abnormality that causes a cluster of symptoms including heart defects; eye, ear and nose malformations; swallowing and breathing difficulties; facial palsy; and brain abnormalities that can cause developmental delays, Stephens said. He spent his first month at the neonatal intensive care unit at Rogue Valley Medical Center. (Mail Tribune, OR)
Extravaganza benefiting CHARGE Syndrome scheduled for Saturday Jul 26, 2006
It is an extremely complex syndrome, involving extensive medical and physical difficulties that differ from child to child, said officials from the CHARGE Syndrome Foundation ... The E in CHARGE syndrome stands for ear abnormalities and deafness ... Mrs. Roberts, with the help of friends and families of other who live with CHARGE syndrome, are hosting a vendor extravaganza Saturday at Garden Ridge Church of Christ in Lewisville. (McKinney Courier-Gazette, TX)
One boy's plight exposes cracks in care system Apr 25, 2006
Anita Cain's son Niall is deaf and blind in one eye and has a heart defect, kidney problems, growth problems, asthma and sleep apnoea - all features of a rare genetic condition known as CHARGE syndrome. After caring for Niall by herself for most of his life - she divorced when he was two - Ms Cain says she can no longer cope with his increasingly difficult behaviour, and has accepted that he must be cared for in a home. (Sydney Morning Herald -- Australia)
