Community rallies Saturday at dinner/auction
By Brenda Sexton
The Courier-Herald
Saturday there was good news on both fronts for family and friends of 4-year-old Olivia Medici.
On the home front in Enumclaw, a Heart to Heart Benefit Dinner and Auction in Olivia's name raised $100,000 that will be used to help her family meet uncovered medical expenses and fund a foundation to aid in research.
"It was a great night," said one of the organizers Heather Boren.
Although Olivia and her family live in Portland, Ore. , many of those on hand were Plateau area family and friends. Olivia's mother, Annalee (Klein) Medici is a 1988 Enumclaw High School graduate.
In North Carolina at Duke Medical Center, Olivia's body seems to be accepting the umbilical stem cell blood transplant she received in January that will hopefully save her life by halting a rare and terminal genetic disorder she inherited.
In November, Olivia was diagnosed with a rare and terminal metabolic disorder called Muco-polysaccharides Storage Disease III and the worst version of it Sanfilippo A. Children diagnosed with Sanfilippo are missing an enzyme that breaks down heparin sulfate, a complex sugar. With out this enzyme, Olivia's body will slowly store the excess sugar it cannot naturally process. The body stores the excess sugar in the brain, heart and soft tissue areas of her skeleton causing mental and physical deterioration. Not only terminal, Sanfilippo A will completely debilitate Olivia as she ages.
Without treatment Olivia would likely die between 10 and 13 years old.
Olivia's hospital treatment will cost about $900,000, not including two years of outpatient treatment following her hospital stay. Insurance will cover about 85 percent of the bill, but Olivia's family will still face tremendous out-of-pocket costs.
The dinner and auction will help cover those costs. The Medici family has also set up a beneficiary fund in Olivia's name at Washington Mutual Bank. Donations to the fund will also help offset uncovered medical, travel and living expenses for Olivia through the next year and a half. Once Olivia's procedure is done a 501(c)3 medical foundation will be established to aid further Sanfilippo research.
The Medicis are trying to drum up awareness for, and education about, the disorder by telling Olivia's story and inviting people to visit their Web site at www.oliviaswish.com where they have posted information and are updating Olivia's progress through regular journal entries.
Brenda Sexton can be reached at bsexton@courierherald.com.