Olivia's Story

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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.

Olivia 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, type A.

Although 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