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"THIS IS HOW SERIOUS IH/PTC & CHIARI REALLY IS"
This is a list of people that we know of who have past on from Chiari, IH/PTC and other conditions: R.I.P
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.
Len Lannon
Philadelphia, Pennsylvania
June 12, 2008
Len had brain and spinal surgery on May 1, 2008. He suffered from 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.
Charles Ross Oscar “Chip” VierowLakeland, MinnesotaNovember 6, 2008Founder 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.
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.
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. She is survived by her husband, Rob; her four children Tyler, Chace, Sam, and Sarah.
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
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.
Brayden Asher {Chiari Type III}
Tomball, Texas
April 12, 2010
1 month old with Chiari Type 3
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.
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.
Nicholas Joseph Thornton {EDS}
August 18, 2010
Milford, Michigan
14 years old.
Wendi Snell {Chiari}
Jacksonville, Arkansas
September 18, 2010
36 teacher, wife, & mother from Jacksonville
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.
Ashtyn Jeanne Mulherin {Chiari}
Langhorne. Pennsylvania
October 15, 2010
19, had surgery for Chiari and then 8 days later she contracted meningitis and several other things went wrong. She spent 7 weeks on life support.
Elizabeth Dinger Beckett{IH}
Irving, Texas
November 27, 2010
Nahtyia Pennington {IH}
December 30, 2010
Janet 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.
Becky Harms {Chiari} {EDS} {Tethered Cord}Norway, MichiganMay 16, 2011She 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.
Michelle Marler McCollum {Mom of a Chiari Kid and Chiari Advocate}Amarillo, TexasMay 20, 2011Lost 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
Michelle MacDonald {Hydrocephalus} Oshawa, Ontario, CanadaMay 23, 2011Columbus, OhioMay 27, 2011She passed away due to complications during her 5th decompression surgery.
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
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.
Philadelphia, Pennsylvania
June 12, 2008
Len had brain and spinal surgery on May 1, 2008. He suffered from 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.
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.
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.
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.
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.
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. She is survived by her husband, Rob; her four children Tyler, Chace, Sam, and Sarah.
Wayne, New Jersey
August 27, 2009
25, went into a coma for 3 weeks.
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. She is survived by her husband, Rob; her four children Tyler, Chace, Sam, and Sarah.
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)
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
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.
Weatherford, Oklahoma
January 5, 2010
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.
Brayden Asher {Chiari Type III}
Tomball, Texas
April 12, 2010
1 month old with Chiari Type 3
Tomball, Texas
April 12, 2010
1 month old with Chiari Type 3
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.
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.
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.
Nicholas Joseph Thornton {EDS}
August 18, 2010
Milford, Michigan
14 years old.
Wendi Snell {Chiari}
Jacksonville, Arkansas
September 18, 2010
36 teacher, wife, & mother from Jacksonville
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.
August 18, 2010
Milford, Michigan
14 years old.
Wendi Snell {Chiari}
Jacksonville, Arkansas
September 18, 2010
36 teacher, wife, & mother from Jacksonville
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.
Ashtyn Jeanne Mulherin {Chiari}
Langhorne. Pennsylvania
October 15, 2010
19, had surgery for Chiari and then 8 days later she contracted meningitis and several other things went wrong. She spent 7 weeks on life support.
Langhorne. Pennsylvania
October 15, 2010
19, had surgery for Chiari and then 8 days later she contracted meningitis and several other things went wrong. She spent 7 weeks on life support.
Elizabeth Dinger Beckett{IH}
Irving, Texas
November 27, 2010
Irving, Texas
November 27, 2010
Nahtyia Pennington {IH}
December 30, 2010
December 30, 2010
Janet 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.
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.
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.
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
Michelle MacDonald {Hydrocephalus}
Michelle MacDonald {Hydrocephalus}
Oshawa, Ontario, Canada
May 23, 2011
Columbus, Ohio
May 27, 2011
She passed away due to complications during her 5th decompression surgery.
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
Garion Barber is my son. I miss him terribly. You are in my prayers. Dawn Barber
ReplyDeleteWe remember with love those we have been privileged to meet and those we know just by their spirit. Chip Vierow of WACMA is my brother. Michelle McCollum also moderated at WACMA and is a dear friend and spirit. Josh Anderson, Haydee Clark, Cat Brewer come also to mind. Brayden..Becky...others......so many heartbreaks we all bear as we share in this together.
ReplyDeleteThank you for your tribute of posting our friends names here. I found it a very special place to lay down my tears and pray for all those who still suffer. I pray especially for all of the earth angels who continue to connect, to serve and to help others as they are uniquely able to.
Thank you. Bless you. Phil 4:8
Ann Hood. WACMA
Hello Mrs. Oldaker,
ReplyDeleteMy name is Zoë Siddall and I am volunteering for the Conquer Chiari Walk Across America. I am looking to make a remembrance poster for individuals who have passed from complications of Chiari for that event. In my research, came across the incredibly moving page on your website about the angels of Chiari and related conditions. The memoirs for each person are deeply touching.
I was wondering if I could use the names of the individuals you noted on that page for the poster? Thank you very much for your help and for sharing the stories that are hard to tell.
Thank you,
Zoë Siddall
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