Hello Everyone,
This weekend I am passing on with permission a special message from Richard Barber, a father whose whole world was turned upside down on the morning of March 29, 2008 when his 8 year old son Garion Michael Barber died from a then unknown cause but some four months later was reported as being Arnold Chiari Malformation Type 1. However, Richard and his family have chosen not to grieve the lost of their son, who would have been ten this January 21, but in loving remembrance celebrate his brief life.
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On March 29, 2008, my 8 year old son, Garion Michael Barber, was
found dead in bed at our home from unknown causes. After almost 4 months
of investigation by the Orange County Medical Examiner, Dr. Jan Garavaglia,
known better by her Discovery Health Channel television show "Dr. G.
Medical Examiner", a cause of death was pinpointed. Our son had a rare,
and to us unknown, condition which lead to his death while he slept
peacefully in bed.
This agency, from Attorney General Bill McCollum himself down,
reached out to our family with love and support while we grieved and came
to grips with the sudden loss of our child. To this day I am still in awe
of what a great group of people we work with and each of you are seen as a
gift from God to us at our worst possible moment.
Because of this we wanted to share with you all an upcoming
television documentary about our son and the condition that caused his
death. The program will air on Discovery Health Channel's "Dr. G Medical
Examiner", January 18, 2010 at 9pm EST. We agreed to this filming in hopes
it would bring information to light to help others and possibly save
someone else's life. At the bottom of this email is the information from
the Discovery Health Channel's web page.
January 21, 2010, would have been Garion's 10th birthday and I will
be on leave from 1/15 - 1-25 to go with family and celebrate his life and
remember the amazing boy that touched so many in so few year. It is our
desire that each of you spend a little extra time with family next week
just enjoying them and all they mean to you.
Thank you all so much,
Senior Investigator Richard Barber & Family
Orlando / MFCU
Dr. G: Medical Examiner
Bruised and Battered
TV-PG
A mother goes to wake her son and finds him unresponsive. He dies on the way to the hospital. And, a woman hears strange sounds coming from the apartment above her. When the police arrive, they find her neighbor dead and covered in bruises.
Date(s): Next Monday, Tuesday, and Saturday - Jan 18, 9:00 pm, Jan 19, 1:00 am, and Jan 23, 6:00 pm (60 minutes)
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According to the National Institute of Neurological Disorders and Stroke, Arnold Chiari Malformation Type 1 is the most common disorder that may not cause symptoms and is often found by accident during an examination for another condition. It is clinically stated as being the following and the first of five types of the disorder.
Type I involves the extension of the cerebellar tonsils (the lower part of the cerebellum) into the foramen magnum, without involving the brain stem. Normally, only the spinal cord passes through this opening. Type I — which may not cause symptoms — is the most common form of CM and is usually first noticed in adolescence or adulthood, often by accident during an examination for another condition. Type I is the only type of CM that can be acquired.
And according to the article “Sudden Death Revealing Chiari Type 1 Malformation In Two Children” by A. Martinot1, V. Hue1, F. Leclerc1, 4, L. Vallee2, M. Closset1 and J. P. Pruvo3 , Arnold-Chiari Malformation Type I that lead to sudden unprovoked cardio respiratory arrest in children is not uncommon; and in the article “Arnold-Chiari Malformation Type I and Sleep-Disordered Breathing: Review of Literature” Apnea, a sleep disorder, is a great cause of concern when it occurs in children because it causes the child’s breathing to be interrupted by pauses between breath and in serious cases stops their breathing altogether.
For more information on neurological disorders or research programs funded by the National Institute of Neurological Disorders and Stroke, contact the Institute's Brain Resources and Information Network (BRAIN) at:
Information also is available from the following organizations:
March of Dimes Foundation 1275 Mamaroneck Avenue White Plains, NY 10605 askus@marchofdimes.com http://www.marchofdimes.com Tel: 914-997-4488 888-MODIMES (663-4637) Fax: 914-428-8203 | National Organization for Rare Disorders (NORD) P.O. Box 1968 (55 Kenosia Avenue) Danbury, CT 06813-1968 orphan@rarediseases.org http://www.rarediseases.org Tel: 203-744-0100 Voice Mail 800-999-NORD (6673) Fax: 203-798-2291 |
Spina Bifida Association 4590 MacArthur Blvd. NW Suite 250 Washington, DC 20007-4266 sbaa@sbaa.org http://www.spinabifidaassociation.org Tel: 202-944-3285 800-621-3141 Fax: 202-944-3295 | American Syringomyelia Alliance Project (ASAP) P.O. Box 1586 Longview, TX 75606-1586 info@asap.org http://www.asap.org Tel: 903-236-7079 800-ASAP-282 (272-7282) Fax: 903-757-7456 |
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Related links:
Garion's Gospel
Garion's Gospel
J Pediatric Health Care. 2003;17(4) © 2003 Mosby, Inc.
Intensive Care Med 1993
Last updated January 12, 2010
Along with the film presentation of young Garion Michael Barber’s life by Dr. Jan Garavaglia, we at the Office of the Attorney General also hopes that this information will be helpful to others and contribute to the saving of many lives.
Evelyn out.