Koin 6 News Story (Flash Video)
Olivia was born on January 6, 2001. She was four weeks early and
showed no signs of being premature. Weighing in at 7.1 pounds, Olivia
was healthy, happy and full of life. As an infant and even now,
Olivia’s eyes are magical and her smile both heartwarming
and infectious. She loves to sing and knows every word to every
nursery rhyme known to mankind.
is the older of two girls. Her younger sister, Eva, is the apple
of her eye. When Eva was born, my husband, Mark, and I, created
a birth announcement with a picture of Olivia holding her baby sister.
The top of the announcement read, "My sister, My friend, My
soul mate for life". It is our belief that the greatest gift
you can give a child is a sibling. Not for one single second can
we imagine having one without the other. The joy Mark and I experience
from watching our two girls interact is absolutely indescribable.
We are so fortunate to be their parents!
Over the course of Olivia’s first 20 months of life, she
experienced several ear infections, two sets of ear tubes, her tonsils
and adenoids removed, was diagnosed with a mild hearing loss, and
immediately fitted for hearing aids.
Between the ages of two and three and a half, Olivia received her
third set of ear tubes and was actively seeing a hearing specialist,
speech therapist and occupational therapist at Oregon’s Hearing
and Speech Institute located in Portland, Oregon. In addition, she
was involved in Early Intervention through the public school system.
Olivia was a mystery to all of her therapists and physicians. And
as her mother, I instinctively knew that what Olivia was experiencing
was so much more than “developmental delays”. I never
stopped searching, and I never accepted “I don’t know”
for an answer.
Through the guidance of Olivia’s pediatrician, Dr. Audrey
Unrau, Mark and I took Olivia to see a geneticist at Emanuel Children’s
Hospital also in Portland, OR. Through three long months of testing,
a diagnosis was confirmed. Our worst nightmare became a reality.
On November 16, 2004, Olivia was diagnosed with Sanfilippo Syndrome,
there is not a cure for this disease, we miraculously came upon
treatment being done at Duke University in Durham, NC under the
care of Dr. Joanne Kurtzberg. If Olivia is accepted into the treatment
program, she will be the 15th child in the world with Sanfilippo
to undergo the treatment. Even with treatment, Dr. Kurtzberg cannot
guarantee that Olivia will ever advance developmentally beyond where
she is right now. It is not ruled out, just not guaranteed. The
treatment will, however, stop the progression of her disease and
provide her with a happier and calmer life. She will still be able
to see and hear and feel the world around her. She will be able
to walk, run, jump, hug, kiss, laugh and play. She will have her
life. We just don’t know for how long.
We invite you on our journey and hope you’ll stay with us
every step of the way.
Annalee & Mark - Olivia’s parents