Chiari {and other related condition} Angels.

When we long for life without difficulties, remind us that oaks grow strong in contrary winds & diamonds are made under pressure. Life is no brief candle it is a sort of splendid torch which we hold for the moment, & we want to make it burn as brightly as possible before handing it on to future generations. As Chiarians we’ll fight long & hard for a bit of purple ribbon to Conquer Chiari.

Garion Michael Barber
Orange County, Florida
March 29, 2008
Featured on Dr. G Medical Examiner Episode, Garion was an 8 year old boy who died in his sleep; reason for his death was ruled 4 months later as Chiari, a diagnosis a doctor had labeled on Garion earlier but never bothered to tell the parents.
http://journeltheconstituent.blogspot.com/2010/01/in-remembrance-of-garion-michael-barber.html

Len Lannon
Philadelphia, Pennsylvania
June 12, 2008
Len had brain and spinal surgery on May 1, 2008. He suffers from a disorder called Chiari Malformation. In addition to the brain surgery, two cervical vertebrae were also repaired. Len suffered some major complications on the third day of recovery. He developed bacterial meningitis, and suffered a stroke.
http://www.caringbridge.org/visit/lensfriends/journal/1

Charles Ross Oscar “Chip” Vierow
Lakeland, Minnesota
November 6, 2008
Founder of WACMA
Had been fighting a courageous battle with a liver disease called nonalcoholic steatohepatitis (which is not associated with Chiari). He spent the last few weeks in the intensive care unit awaiting a liver transplant, but became too sick before a liver became available for him.
http://www.legacy.com/obituaries/twincities/obituary.aspx?n=charles-ross-oscar-vierow-chip&pid=119893649

Clinton Botha
East Timor, New Zealand
March 7, 2009
A young New Zealand soldier who served in East-Timor. Botha’s promising career was being hampered by debilitating headaches, and he was told surgery would relieve pressure on his brain. However, twelve hours after that minor operation, Clinton died of respiratory failure at Christchurch hospital.

Brianna Lynn McCarthy
June 4, 2009
Peacefully away at the Health Sciences Centre St. John’s, NL on Thursday June 4, 2009. She was 34.

Rebecca Pence
June 2009

Jessica Depassano {Chiari}
Wayne, New Jersey
August 27, 2009
25, went into a coma for 3 weeks.
http://tinyurl.com/4xuftpf

Kelly Jean Davis Morrill {Chiari} {EDS} {Tethered Cord} {Hydrocephalus} {Subcraneal Instability}
Layton, Utah
October 10 2009
Two decompression surgeries, second was a full sinus, csf leakage on both, viral meningitis, shunt placement surgery, cranial placement surgery, 11 shunt revisions, staff meningitis, TC surgery. Kelly, 44, passed away peacefully on Saturday, October 10, 2009 after a long and valiant battle with Arnold Chiari Malformation. Kelly was a loving wife, mother, daughter, sister, aunt and friend. She was born February 4, 1965 in Ogden, Utah. Attended Utah State University, served the deaf as a sign language missionary in the Virginia Roanoke LDS mission. Kelly started a website to provide help, support and information for others who are affected by the Chiari Malformation
http://www.utahchiariconnection.blogspot.com

She is survived by her husband, Rob; her four children Tyler, Chace, Sam, and Sarah. Condolences to http://www.lindquistmortuary.com

Sarah Thomas {Chiari}
Joliet, Illinois
October 14, 2009
22, Thomas eventually learned about a renowned neurosurgeon based in Milwaukee, Dr. Dan Heffez, who had performed operations on hundreds of patients with similar symptoms since the late 1990s. The published results were encouraging, said the teen, whose familiarity with medical vernacular was light years ahead of her chronological age. With the wholehearted support of her parents, Thomas scheduled a consultation in the fall with the physician in Milwaukee. He detected blankets of scar tissue draped around the teen’s brain stem from Arnold-Chiari syndrome and suggested surgery as soon as possible. “It was such a relief that someone found something,” she said. The dedicated high school honor student was able to schedule the surgery during her Thanksgiving vacation, so she would miss the least amount of school as possible. On Nov. 21, 2005 Thomas underwent surgery. While recovering from the operation, she was delighted to wiggle her toes again and move quite easily from the hospital bed. “It was nothing short of a miracle,” said the teen-ager’s mother. Speaking about the teen’s remarkable improvement, Karen said, “I can’t describe it)

Melinda Kay Fancher {IH}
Weatherford, Oklahoma
January 5, 2010
http://tinyurl.com/3e9fva4

Charla Cochran {Chiari}
Dallas, Texas
March 18, 2010
Mom of 3 great kids; Collin, 14, Maddie, 12, and Macie, 6. Was married to the love of her life, Jeremy. Had an endoscopy on 3/13, died in her sleep 5 days later. http://www.facebook.com/charlacochran

Brayden Asher {Chiari Type III}
Tomball, Texas
April 12, 2010
1 month old with Chiari Type 3
http://www.youtube.com/watch?v=9CeD1Ut4_aU

John Smith {Chiari}
Grapevine, Texas
April 23, 2010
John was decompressed in 2004, he was an amazing father, son, brother and friend. John was 36 when he died leaving be hind two amazing children Colton and Garrett. He was found in his front yard, he could no longer take the pain and the Doctors said deal with it. A graduate of Grapevine high school, he got his degree at TSTC in Waco worked at Gulfstream Aerospace. He could make anyone having a bad day have a good day. There was nothing he couldn’t do or fix except Chiari. Loved the Cowboys more then anyone I have ever seen, crazy.
http://www.facebook.com/profile.php?id=100000620034473

Tyler Moore {Chiari}
Lorain, Ohio
May 29, 2010
20 years old with Chiari
http://www.legacy.com/obituaries/courierpress/obituary.aspx?n=tyler-moore&pid=143284023

Sally Meehan {Chiari}
Filton, Bristol, South Gloucestershire, UK
June 29, 2010
39 years old six months after giving birth to her second child Mrs. Meehan died in hospital after an operation to treat a rare brain condition. The former Filton High School pupil had gone under the knife after being diagnosed with a previously undetected condition called Chiari malformation. On June 26 she died after failing to recover from the emergency operation. She had an operation at Southampton General Hospital in a bid to treat the illness and although it was initially deemed a success, her health deteriorated, causing heart failure, and although she underwent an emergency operation, she never recovered.
http://www.thisisbristol.co.uk/news/Rare-brain-condition-took-Sally-soon/article-2387655-detail/article.html

Canton Ossoinik {vEDS}
August 11, 2010
Waukesha, Wisconsin
Canton passed away due to a dissection of his aorta due to Vascular Ehlers Danlos. He was 30 years old and we knew he had VEDs for ten years.

Nicholas Joseph Thornton {EDS}
August 18, 2010
Milford, Michigan
14 years old.
http://karrersimpson.com/obituaries/nicholas-thornton

Wendi Snell {Chiari}
Jacksonville, Arkansas
September 18, 2010
36 teacher, wife, & mother from Jacksonville
http://arkansasleader.blogspot.com/2010/09/obituaries-09-18-10.html
http://www.pcssd.org/super-corner.html#23sep

Amy Krambeck Campbell {IH}
Nashville, Tennessee
September 18, 2010
I have intracranial hypertension (IH) since 2005 following a stroke. This was due to 12 clots in the right side of my brain caused by clotting disorders. My spinal pressure is out of control and I have a shunt in my brain to help relieve pressure, but it isn’t enough. I have had 9 brain surgeries, 4 spinal surgeries, lost count of the spinal taps, numerous other surgeries and infections. I take between 12 and 15 pills daily to manage my blood and prevent seizures. She passed due to the clotting disorder after unrelated surgery.
http://www.facebook.com/amy.krambeck.campbell

Ashtyn Jeanne Mulherin {Chiari}
Langhorne. Pennsylvania
October 15, 2010
19, Complications from Chiari

Elizabeth Dinger Beckett{IH}
Irving, Texas
November 27, 2010
http://www.facebook.com/edbeckett

Nahtyia Pennington {IH}
December 30, 2010

Janet Lynn Gordon Walters {IH}
Camby, Indiana
May 2, 2011
Janet Walters was found on May 2, 2001 in her car after being told by her surgeons that there was nothing else that could be done for her. She was from Plainfield Indiana. She is survived by her husband and children.
http://flyergroup.com/obituaries/x833655808/Janet-Lynn-Gordon-Walters-of-Danville

Jennifer Rae Crutchfield {IH}
Maryville, Tennessee
May 13, 2011
http://tinyurl.com/62j4tbq

Becky Harms {Chiari} {EDS} {Tethered Cord}
Norway, Michigan
May 16, 2011
She died in her home May 16, 2011 after several years of health issues due to Chiari Malformation. She is survived by her husband and children. 
http://tinyurl.com/3kq9dtz

Michelle Marler McCollum {Mom of a Chiari Kid and Chiari Advocate}
Amarillo, Texas
May 20, 2011
Lost her 5 year battle with cancer. She had lost most of her leg and dealt with many infections in that leg on top of the cancer. Her son, Mason, is a Chiari Kid and Michelle worked long and hard as an advocate for her son and all Chiarians. She was a moderator for Chiari Connection International 
http://www.facebook.com/profile.php?id=1816625295

Michelle MacDonald {Hydrocephalus}
Oshawa, Ontario, Canada
May 23, 2011
Along with Hydrocephalus, Michelle had been fighting Septicemia and Diabetes
http://www.facebook.com/notes/michelles-journey/may-23rd-2011/211739508859914

Kristi Smith {Chiari}
Columbus, Ohio
May 27, 2011
She passed away due to complications during her 5th decompression surgery. 
http://www.facebook.com/profile.php?id=1403529350

Shannon Paige Hudson Terry {Chiari}
Carrollton, Texas
May 31, 2011
Mother of Madison, Wife of Joe. She passed from complications related to medications she was taking to manage her severe Chiari symptoms. She was 5 years post-decompression. 
http://www.caringbridge.org/visit/shannonterry

Barbara Mostow Goldenhersh{EDS}
Belleville, Illinois
June 10, 2011
Passed from complications from a blood clot in her interior jugular vein
http://www.facebook.com/barbara.goldenhersh

Beth Rieger Maier {IH}
July 27, 2011
Circumstances Unknown
http://www.facebook.com/profile.php?id=1022322582

One Comment on Chiari {and other related condition} Angels.

  1. mebswartz
    May, 27th 2011 at 9:03 pm

    Thank you for remembering our Chiarian sisters and brothers, Aimee, and thank you for posting this link on Facebook, as I’d been going to ask if someone had such a list. These are sad, very sad times for the Chiari community.

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