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Our Reasons to Run: Faith

Faith’s story, as told by her mom, Sonia:

Faith Sonia “Faithy” Griffin was born on November 22, 2002. After three miscarriages and several infertility treatments our family was finally blessed by GOD with our miracle girl. It took all our faith to get her here, just as much and more to keep her here, so her name to say the least was definitely befitting. She was the oldest of two children. Faithy was a caring, loving, joyful, energetic, playful, smart, 5 year old girl. She loved arts and crafts, painting, running, gymnastics, swimming, dancing, listening to music, and having lots of fun with her friends and family. Faith was an energetic, loving daughter, big sister, grand daughter, niece, cousin and friend. She was gentle, kind and had a special gift and love for babies. Her laugh and smile were contagious and would light up a room to capture your heart.

On October 7, 2007, life as our family knew it, ceased to exist. Faith’s battle began when she presented with some sporadic symptoms of vomiting, unbalance, and emotional changes during the first week of October. We went to Joe DiMaggio’s Children’s emergency room and there is where our lives changed forever. We were given the horrible news that a mass was detected around Faith’s brain stem, wrapped around a major artery and woven itself into the brain’s pons, which is the central control for all of our life’s functions. Our only daughter was diagnosed with a Diffused Intrinsic Pontine Glioma (DIPG), one of the most aggressive and deadly forms of brain tumors diagnosed in children between the ages of 3 and 16. DIPG tumors are inoperable and incurable. Approximately 80% of patients diagnosed with a DIPG die within one year of diagnosis; 90% die within two years of diagnosis and 99% die within five years of diagnosis. Conventional treatment consists of general radiation and chemotherapy. Alternative treatments include various clinical trials (approximately 250 over the past 30 years) which, to date; have proven no more effective than conventional treatment.

Pontine brainstem tumors affect the cranial nerves, destroying the nerves that control the muscles of the eye and face along with muscles involved in breathing and swallowing. DIPG symptoms include double vision, inability to close they eye lids completely, “drooping” on one side of the face, and difficulty with speech and walking. As the tumor grows, children initially lose their ability to use their arms and legs. They then lose control of their bowels. They subsequently lose their hearing, vision and ability to swallow & breathe. Notwithstanding their physical deterioration, the children maintain their mental faculties, are fully cognizant of what is happening to them and experience pain comparable to being skinned alive. Survival beyond 12-24 months is uncommon and new approaches to treating these tumors are desperately needed.

On November 2, 2008 our beloved little girl lost her battle and died after complications associated with her brainstem tumor. She will forever be loved and missed by her friends and family all over the world and by the community she loved so much.

Faithy was an inspiration to everyone who met her and who learned of her fight with cancer. The community embraced her because of her courage and strength she portrayed during her struggle. She was often referred to as an "Old Soul" because she possessed wisdom far beyond her almost 6 years. During the duration of her illness, Faithy never gave up hope. She was a fighter to the end and certainly a hero.

We will continue to hope for a cure. Thank you for your generosity and thank you for participating in A Reason To Run.


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