Inspiration Stories

This portion of the website is dedicated to patients and caregivers by allowing them to share their ependymoma stories.

This organization would never have been formed if it weren’t for amazing people like you. It is imperative to share information, as this is a core value of our foundation. Please, take time to read about some remarkable lives and if you feel comfortable, submit some insight into your own personal journey.

Life is a Roller Coaster

— Categories: Categories: Adult   Spine     Posted on October 31, 2017

Prashant was misdiagnosed for months until an MRI revealed an ependymoma tumor in his spine.

Shedding Light on This Rare Disease

— Categories: Categories: Adult   Spine     Posted on September 27, 2017

Sarah discovered an ependymoma tumor blocking her spinal canal after two unmedicated C-sections.

Every Child Deserves a Bright Future

— Categories: Categories: Brain   Pediatric     Posted on July 14, 2017

Chris' mother is determined to make a difference in his memory so she created Fighting Ependymoma that gives hope to children fighting ependymoma.

Along For the Ride

— Categories: Categories: Adult   Brain     Posted on June 7, 2017

While Hilary was traveling around Northeast Asia, she became sick and her tumour made its presence known – a grade II ependymoma.

Burke Speaks at Ependymoma Awareness Day

— Categories: Categories: Brain   Pediatric     Posted on May 26, 2017

Burke shared his journey with ependymoma to patients and caregivers at the Ependymoma Awareness Day butterfly release on May 8, 2017.

A Unique Bond Between a Father and Daughter

— Categories: Categories: Adult   Brain     Posted on April 24, 2017

Allie and her father both had brain surgery to remove a tumor resulting in a deeper relationship.

A Story of Recovery from Spinal Cord Tumor Surgery

— Categories: Categories: Adult   Spine     Posted on February 10, 2017

Dawn shares what it's like recovering from surgery while giving those who are on a similar journey the reassurance that they are not alone.

Michelle My Hero

— Categories: Categories: Adult   Spine     Posted on January 18, 2017

Michelle's neurosurgeon discovered multiple tumors along her spine, but through it all she remains positive.

An Extraordinary Destiny

— Categories: Categories: Adult   Brain     Posted on November 2, 2016

Adam shares his experiences by writing a book that includes quotes that gave him encouragement during his ependymoma treatment.

Mother Writes Book to Help Others Cope

— Categories: Categories: Brain   Pediatric     Posted on October 18, 2016

Shawn’s mother writes a book, A Sippy Cup of Chemo, to help other brain tumor families travelling down the same path.

Imagine

— Categories: Categories: Brain   Pediatric     Posted on July 26, 2016

Henry’s mom shares a poem of the challenges faced when coping with an ependymoma and the importance of Childhood Cancer Awareness Month.

Living Each Day to the Fullest

— Categories: Categories: Pediatric   Spine     Posted on March 24, 2016

After falling on a playground at school, Sophia cried for days in pain. Doctors later discovered a tumor in her spine.

Blayne Overcomes Ependymoma

— Categories: Categories: Brain   Pediatric     Posted on February 29, 2016

Blayne’s parents discovered a brain tumor when he was just a toddler. Now at age 20, he has overcome his treatment side effects.

Sienna’s Hope

— Categories: Categories: Brain   Pediatric     Posted on November 30, 2015

Kylie’s blog, Sienna’s Hope, documents her daughters journey with anaplastic ependymoma. This has helped her cope, but she also wanted to share her blog with other families facing the same battles.

The Day Our Lives Changed Forever

— Categories: Categories: Brain   Pediatric     Posted on September 18, 2015

Doctors told Ava’s family that she had a brain mass and needed to have surgery. They discovered a grade III anaplastic ependymoma.

A Family’s Diagnosis Inspires Book, “If You Love Me, Take Me Now”

— Categories: Categories: Adult   Brain     Posted on June 4, 2015

Neurologists called Steve with the news that they found an ependymoma tumor attached to his brain stem. This inspired him to write a book.

Dismuke Family Speaks at the 2015 Ependymoma Awareness Day

— Categories: Categories: Brain   Pediatric     Posted on May 25, 2015

Ashley shares Ingram’s journey with anaplastic ependymoma to patients and caregivers at the 2015 Ependymoma Awareness Day.

A Mother Takes Matters Into Her Own Hands

— Categories: Categories: Pediatric   Spine     Posted on April 25, 2015

With the lack of funding and more research needed for myxopapillary ependymoma, a mother decides awareness for this rare cancer.

Ependymoma Does Not Define Us

— Categories: Categories: Adult   Spine     Posted on January 16, 2015

While Vickie was stepping out of the shower, she slipped and fell on her tailbone, causing excruciating pain. An MRI revealed a spinal ependymoma.

Emma Continues to Smile Through Cancer

— Categories: Categories: Brain   Pediatric     Posted on December 17, 2014

When Emma was just 13-months-old, her pediatrician noticed a slight drooping on one side of her face, which was caused by an anaplastic ependymoma.

Learning to Live Everyday Like It Is Our Last

— Categories: Categories: Adult   Spine     Posted on November 22, 2014

Eileen’s son pulled on her hair to catch his fall causing a huge shock up her spine. This led her to the ER where doctors found an intramedullary ependymoma.

Adam Brings Hope to Others

— Categories: Categories: Brain   Pediatric     Posted on September 15, 2014

Adam, diagnosed with grade III ependymoma, wanted to help other kids that are going through similar experiences by shaving his head.

Linda Shares Her Experiences To Help Others

— Categories: Categories: Adult   Brain     Posted on August 24, 2014

For the past fourteen years, Linda has overcome two craniotomies, stereotactic radiotherapy and hopes her story will help others with similar circumstances.

Kimberlee is a Fighter

— Categories: Categories: Adult   Brain     Posted on July 11, 2014

Kimberlee was diagnosed with an ependymoma and had many physical and mental problems that she had to overcome.

Sebastian’s Mother Determined to Beat Cancer

— Categories: Categories: Brain   Pediatric     Posted on June 10, 2014

Sebastian, who was only 7-years-old, began complaining of headaches and vomiting. His mother, who also battled cancer, discovered her son had a grade II anaplastic posterior fossa ependymoma.

Mother Creates Awareness to Find a Cure

— Categories: Categories: Brain   Pediatric     Posted on May 27, 2014

After Ethan was diagnosed with a posterior fossa ependymoma, his mother decided she can’t sit back and do nothing.

Chelsea’s “New Normal”

— Categories: Categories: Adult   Spine     Posted on May 6, 2014

After being married for eight months and trying for her first baby, Chelsea began having horrible back pains. An MRI revealed a tumor in her spine, an intramedullary ependymoma.

A New Perspective on Life

— Categories: Categories: Adult   Brain     Posted on April 14, 2014

After having unusual blackouts and changes with his vision, Trevor’s scans revealed an ependymoma in his left occipital lobe.

Building a Legacy in Honour of Connor Dawes

— Categories: Categories: Brain   Pediatric     Posted on February 11, 2014

After Robert passed away from anaplastic ependymoma, his mom and family honour him by creating the RCD Fund.

Making The Most of Every Day With Ethan

— Categories: Categories: Brain   Pediatric     Posted on October 30, 2013

When Ethan was only one, his family noticed something wasn’t quite right. He was later diagnosed with grade 2 ependymoma in the posterior fossa.

Every Cloud Has Its Silver Lining

— Categories: Categories: Adult   Spine     Posted on September 10, 2013

After being diagnosed with myxopapillary ependymoma, Anne Moriarty struggled to get pregnant. Her outlook on life has been forever changed.

Morissa is One Tough Cookie

— Categories: Categories: Pediatric   Spine     Posted on July 26, 2013

Mandy, Morissa’s mom, went to numerous doctors to finally find out that her daughter was diagnosed with a spinal myxopapillary ependymoma.

Life Is More Than The X’s And O’s

— Categories: Categories: Adult   Spine     Posted on June 11, 2013

Coach Casey was diagnosed with spinal ependymoma and lives by the motto, “If it is to be, it is up to me.”

Ian Speaks At Ependymoma Awareness Day

— Categories: Categories: Brain   Pediatric     Posted on May 2, 2013

Ian shares his sons story, Colin, who was diagnosed with anaplastic ependymoma at age two, during the 2013 Ependymoma Awareness Day.

Kimberly Delivers Speech At Butterfly Release

— Categories: Categories: Brain   Pediatric     Posted on April 24, 2013

Kimberly honors the memory of her son, Ryan, at the 2013 Ependymoma Awareness Day. Ryan was diagnosed with ependymoma in 2007 and sadly lost his battle on May 26, 2012.

Tony Adjusts to His New Body

— Categories: Categories: Adult   Spine     Posted on April 12, 2013

After excruciating neck pain, Tony’s MRI revealed an intramedullary ependymoma. After being diagnosed and rehabilitation, Tony had to adjust to his new body.

Brave Maisie

— Categories: Categories: Brain   Pediatric     Posted on March 1, 2013

Maisie was diagnosed with supratentorial anaplastic ependymoma at the age of three. She has no idea how strong she really was and still is to this day.

Intramedullary Ependymoma – My Journey

— Categories: Categories: Adult   Spine     Posted on February 13, 2013

Sarah’s blog, documents her journey with intramedullary ependymoma: a real look into surgery, rehabilitation, and treatment with a little bit of humor.

Taking One Step At A Time

— Categories: Categories: Brain   Pediatric     Posted on January 25, 2013

Hannah doesn’t dwell on that past and believes that God put her on this earth for a reason, diagnosed with ependymoma at age four.

Kendal No Longer Takes Anything for Granted

— Categories: Categories: Adult   Brain     Posted on January 2, 2013

Kendal spent a decade plagued with numbness, tingling, seizures, and numerous tests. He was finally diagnosed with an anaplastic ependymoma.

Diagnosis Inspires Missy to Help Others

— Categories: Categories: Adult   Spine     Posted on December 1, 2012

Everyone told Missy that headaches and neck pain are normal signs of stress. She was later diagnosed with a benign intramedullary ependymoma.

Shelby’s Story

— Categories: Categories: Brain   Pediatric     Posted on November 21, 2012

When life gave Shelby lemons, she made lemonade and shared its sweetness with everyone she knew. She was diagnosed with grade III ependymoma at one.

Ivory’s Mother Continues To Hope

— Categories: Categories: Brain   Pediatric     Posted on October 4, 2012

Julie shares her advice and experiences as a mother of Ivory, diagnosed with grade II ependymoma.

Mother Diagnosed Never Gives Up

— Categories: Categories: Adult   Brain     Posted on September 27, 2012

Jennifer lives by the motto, “Never, never, never give up.”

Zsila Overcomes Ependymoma and Gives Back

— Categories: Categories: Brain   Pediatric     Posted on August 6, 2012

After Zsila was diagnosed with grade II ependymoma in 1994, she decided to give back and become a Pediatric Neoro-Oncologist.

Boyden Celebrates Life

— Categories: Categories: Adult   Brain     Posted on July 7, 2012

Greg was diagnosed with grade II ependymoma and then treated. He shares his advice and his new enthusiasm for life after no signs of regrowth.

Mother Gives Advice on Newly Diagnosed

— Categories: Categories: Brain   Pediatric     Posted on June 17, 2012

Sue, Julia’s mother, shares her advice and experiences that she has learned from her daughter’s battle with ependymoma.

Eric Honors His Daughter

— Categories: Categories: Brain   Pediatric     Posted on May 8, 2012

Eric delivers a speech at the 2012 Ependymoma Awareness Day butterfly release to honor his daughter, Kayla, who passed away at the age of 12 after battling ependymoma.

Baby Minty’s Story

— Categories: Categories: Brain   Pediatric     Posted on May 2, 2012

Mei Lai shares her story about her daughter, Minty, who was diagnosed with malignant anaplastic ependymoma.

Dealing with the Weight of a Diagnosis

— Categories: Categories: Adult   Brain     Posted on April 14, 2012

Mark was diagnosed with an anaplastic epenymoma. He shares his advice and wisdom on dealing with the diagnosis.

Words of Wisdom from Adult Ependymoma Survivor

— Categories: Categories: Adult   Brain     Posted on March 25, 2012

Matt was gracious to share with us his story of navigating through his journey with ependymoma. Read more as he shares his advice on dealing with the medical community and ependymoma.

Alexa’s Gifts of Hope Foundation

— Categories: Categories: Brain   Pediatric     Posted on March 11, 2012

Alexa’s Gifts of Hope Foundation raises money for pediatric brain tumor research and helps support children who are afflicted with ependymoma.

One Day at a Time

— Categories: Categories: Adult   Brain     Posted on February 16, 2012

Kimberly, daughter of an ependymoma survivor, shares her advice and unique perspective on coping with the experience of having a loved one fight cancer.

Five Pieces of Advice

— Categories: Categories: Adult   Brain     Posted on January 4, 2012

Bruce, an ependymoma survivor, brain tumor advocate, facilitator of two brain tumor support groups, grandfather, believer, and teller of bad jokes shares his advice.

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