Category Archive: SCT Kids Stories

Nov 01 2016

Nadav’s Story

Nadav is a 14 year old boy who was diagnosed with Neurofibromatosis Type 1 at the age of 2. He’s been having regular head and spine MRIs since the age of 4, and in 2013 started developing an intramedullary tumor in the cervical spine, at C3. In mid-2016 his medical team reached the conclusion that while the tumor was probably a …

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Jun 07 2014

Lucas’ Story

mtahlbach@hotmail.com Age of surgery: 8 yrs old City/State: Las Vegas Nevada Type: Ganglioglioma C1-just past C5,large brain stem cyst Hospital: Lucille Packard Childrens Hospital at Stanford Neurosurgeon: Dr. Michael Edwards Surgery: January 2000 Radiation/Chemo: No/No Lucas was 8 yrs old when he started to complain of neck pain in the middle of the night. 6 …

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Sep 05 2012

Zachery’s Story

phylscircus2@aol.com Age of surgery: 8 1/7/2000 City/State: Brentwood, New York Type: Glioblastoma/Anaplastic Oligo Hospital: Winthrop University Neurosurgeon: Mark Mittler Surgery: January 2000 Radiation: Yes Zachary’s Story My son Zachery was a normal healthy baby when he was born on May 21, 1999. It was a plane ride to New York at 5 months that triggered …

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Sep 05 2012

Wyatt’s Story

FJenifr@aol.com Age: 2 City/State: Alto Michigan Type: Ganglioma C2-C7 Hospital: Devos children’s hospital Neurosurgeon: Dr. Stanley Skarli pediatric neuro surgeon Surgery: August 2007 Radiation/Chemo: No Wyatt’s Story Hi There, My name is Jennifer, I am writing to share out story, and also express how wonderful it has been to find your association. I cannot say …

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Sep 05 2012

Taylor’s Story

deweypt@verizon.net Age of surgery: 14 City/State: Herndon,Virginia Type: Intramedullary Ependymoma, C1 – T7 Hospital: Georgetown University Hospital, Washington, DC Neurosurgeon: Dr. Fraser Henderson Surgery: June 2003 Radiation: None Taylor’s Story My then 14 year-old daughter Taylor was diagnosed with an intramedullary ependymoma stretching from the C-1 to C-7 vertebrae in June 2003. She was injured …

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Sep 05 2012

Michael’s Story

deb122459@yahoo.com Age: 25 City/State: Type: Lipoma, C1 – C7 Hospital: Albany Med. Ctr., Albany, NY Neurosurgeon: Dr. Emmerich Surgery: 2 months after birth, 2nd surgery 1993 Chemotherapy: None Michael’s Story My son, Michael, was born with a Lipoma intermendulary spinal cord tumor, C1-C7. He was diagnosed at 2 months old and had his first surgery …

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Sep 05 2012

Maddie’s Story

mlhayes@fs.fed.us Age: 12 City/State: Hood River, OR Type: Pilocytic Astrocytoma T7-T12 Hospital: Doernbecher Childrens Hospital, OR Neurosurgeon: Dr. Piatt & Dr. Seldan Surgery: May 1998, October 2001, July 2003 Chemotherapy: Yes Maddie’s Story My daughter Maddie started having pain in her back just before she turned 7 years old. After going to her primary doctor, …

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Sep 05 2012

Lucy’s Story

karenupfield@aol.com Age of surgery: 13 Country: Sussex, England Type: Thoraco-medullary intramedullary Myxopapillary Ependymoma Hospital: Kings College Hospital, London Neurosurgeon: Mr. Chandler Surgery: June 2010 Further treatment: None Lucy’s Story I am Lucy’s Mum and am writing this to give hope to other parents who have received the frightening diagnosis of a spinal tumor in their …

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Sep 05 2012

Kyle’s Story

j.favata@verizon.net age: 13 City/State: East Hampton, NY Type: Disseminated Myxopapillary Ependymoma , T10 – S3 Hospital: Schneider Children’s Hospital Neurosurgeon: Dr. Steven J. Schneider Surgery: February 1999 & June 2002 Radiation: Radiation & Chemotherapy Kyle’s Story First Surgery February 18th, 1999 Kyle started having leg pains in August 1998, which we thought were just from …

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Sep 05 2012

Kristin’s Story

s-o-hegg@frisurf.no Age: 8 Country: Norway Type: Ependymoma, T6 – T12 Hospital: University Hospital of Tromso, Norway Neurosurgeon: Dr. Tor Ingebrigtsen Surgery: 12/98, 01/00, 05/00, 06/01 Radiation: None Kristin’s Story Our 6 year old daughter Kristin is a spinal cord tumor survivor. She is a brave little girl who has underwent 3 surgeries for an intramedullary …

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