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.