Mariah’s Story

On April 27, 2007 our world was shattered by the devastating news that our youngest daughter, Mariah (Riah), had a rare and inoperable brain tumor.  The type of tumor she was diagnosed with is called a Diffuse Intrinsic Pontine Glioma (DIPG).  This type of tumor is located in the brain stem, at the base of the brain.  Affecting primarily children, it is the rarest and worst of pediatric brain tumors. Approximately 150 to 200 children are diagnosed each year. This type of tumor is considered terminal.  The prognosis our doctors gave Mariah was six to twelve months.

As Mariah’s parents, we were in desperate need of answers, but none were available.  We searched every possible article, journal, book or the Internet for anything to give us hope and to save our little girl.  All the information we came across didn’t offer any type of treatment that ended in a cure.  There was very little research on this type of tumor and any treatment that was available inevitably lead to the death of a child.  We felt an overwhelming sense of helplessness.  Radiation and chemotherapy can be used in an attempt to shrink the tumor and reduce symptoms, but typically there is renewed tumor progression within six to nine months after radiation.  The frustration lies in that there have been no advances in treatment options for more than thirty years.

During those times that she was admitted to the hospital, she would distract herself with coloring.  She didn’t talk until July; she didn’t walk until October.  She spent all of that time with her artwork.  Because she had right side paralysis she learned to color and draw with her left hand.  We do believe coloring was her favorite hobby and it also served as therapy for her.  She taught herself how to use her right hand again just by showing everyone how well she colored.

Ultimately, Mariah lost her battle with this debilitating disease.  It robbed her of everything she loved to do and all of her dreams.  Although her spirit lives on in all of our hearts, we miss her tremendously.  She truly is the inspiration behind Riah’s Rainbow.