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.
While Hilary was traveling around Northeast Asia, she became sick and her tumour made its presence known – a grade II ependymoma.
Burke shared his journey with ependymoma to patients and caregivers at the Ependymoma Awareness Day butterfly release on May 8, 2017.
Allie and her father both had brain surgery to remove a tumor resulting in a deeper relationship.
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's neurosurgeon discovered multiple tumors along her spine, but through it all she remains positive.
Adam shares his experiences by writing a book that includes quotes that gave him encouragement during his ependymoma treatment.
Shawn’s mother writes a book, A Sippy Cup of Chemo, to help other brain tumor families travelling down the same path.
Henry’s mom shares a poem of the challenges faced when coping with an ependymoma and the importance of Childhood Cancer Awareness Month.
After falling on a playground at school, Sophia cried for days in pain. Doctors later discovered a tumor in her spine.
Blayne’s parents discovered a brain tumor when he was just a toddler. Now at age 20, he has overcome his treatment side effects.
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.
Doctors told Ava’s family that she had a brain mass and needed to have surgery. They discovered a grade III anaplastic ependymoma.
Neurologists called Steve with the news that they found an ependymoma tumor attached to his brain stem. This inspired him to write a book.
Ashley shares Ingram’s journey with anaplastic ependymoma to patients and caregivers at the 2015 Ependymoma Awareness Day.
With the lack of funding and more research needed for myxopapillary ependymoma, a mother decides awareness for this rare cancer.
While Vickie was stepping out of the shower, she slipped and fell on her tailbone, causing excruciating pain. An MRI revealed a spinal ependymoma.
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.
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, diagnosed with grade III ependymoma, wanted to help other kids that are going through similar experiences by shaving his head.
For the past fourteen years, Linda has overcome two craniotomies, stereotactic radiotherapy and hopes her story will help others with similar circumstances.
Kimberlee was diagnosed with an ependymoma and had many physical and mental problems that she had to overcome.
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.
After Ethan was diagnosed with a posterior fossa ependymoma, his mother decided she can’t sit back and do nothing.
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.
After having unusual blackouts and changes with his vision, Trevor’s scans revealed an ependymoma in his left occipital lobe.
After Robert passed away from anaplastic ependymoma, his mom and family honour him by creating the RCD Fund.
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.
After being diagnosed with myxopapillary ependymoma, Anne Moriarty struggled to get pregnant. Her outlook on life has been forever changed.
Mandy, Morissa’s mom, went to numerous doctors to finally find out that her daughter was diagnosed with a spinal myxopapillary ependymoma.
Coach Casey was diagnosed with spinal ependymoma and lives by the motto, “If it is to be, it is up to me.”
Ian shares his sons story, Colin, who was diagnosed with anaplastic ependymoma at age two, during the 2013 Ependymoma Awareness Day.
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.
After excruciating neck pain, Tony’s MRI revealed an intramedullary ependymoma. After being diagnosed and rehabilitation, Tony had to adjust to his new body.
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.
Sarah’s blog, documents her journey with intramedullary ependymoma: a real look into surgery, rehabilitation, and treatment with a little bit of humor.
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 spent a decade plagued with numbness, tingling, seizures, and numerous tests. He was finally diagnosed with an anaplastic ependymoma.
Everyone told Missy that headaches and neck pain are normal signs of stress. She was later diagnosed with a benign intramedullary ependymoma.
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.
Julie shares her advice and experiences as a mother of Ivory, diagnosed with grade II ependymoma.
Jennifer lives by the motto, “Never, never, never give up.”
After Zsila was diagnosed with grade II ependymoma in 1994, she decided to give back and become a Pediatric Neoro-Oncologist.
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.
Sue, Julia’s mother, shares her advice and experiences that she has learned from her daughter’s battle with ependymoma.
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.
Mei Lai shares her story about her daughter, Minty, who was diagnosed with malignant anaplastic ependymoma.
Mark was diagnosed with an anaplastic epenymoma. He shares his advice and wisdom on dealing with the diagnosis.
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 raises money for pediatric brain tumor research and helps support children who are afflicted with ependymoma.
Kimberly, daughter of an ependymoma survivor, shares her advice and unique perspective on coping with the experience of having a loved one fight cancer.