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A reason to race

Money raised from the Olivia Medici Memorial 5K Run/Walk will go to help support families of sick children
by: Submitted photo, REMEMBERING OLIVIA — Above is an image, taken by a family photographer of Olivia Medici who died in November at the age of 5 from complications with a stem cells transplant to treat MPS Sanfilippo.

TIGARD - Almost six months after the loss of her daughter, Annalee Medici shakes her head when people comment on how strong she and her family have been.

'We didn't do it alone,' she acknowledges.

Annalee ran through a list of family, extended family, friends and neighbors who offered their time as Annalee and her husband Mark struggled to search out and handle treatment for their daughter Olivia. Olivia was diagnosed at the age of 3½ with MPS Sanfilippo - a disorder that occurs when dead cells are not digested because of a missing enzyme and are instead stored in soft tissue organs and muscles. The disorder leads to progressive damage and eventually death. There is no cure.

In November, Olivia, then 5 died from complications that arose from a stem cell transplant.

In an online journal entry on oliviaswish.com four months after Olivia passed away, Annalee wrote: 'We are heartbroken, we are sick with sadness, we are forever changed, and we are still standing.'

'It's all about understanding the lengths that we all go to for our children regardless of the situation,' Annalee said as she stood in her Tigard home, a flyer for her daughter's memorial run wedged on a kitchen cabinet door behind her.

Annalee has admittedly kept herself busy the last couple months with the planning of a memorial walk that will honor her daughter and raise money to help families of other sick children who fight and struggle to find treatment for their children.

Recalling her daughter's six-month stay at Duke University Hospital in North Carolina in 2005, Annalee remembered seeing families 'who lived in the units with their children. They stayed in those rooms for up to 24 hours a day for 60 days.'

Annalee acknowledged that her family was not the norm when it came to traveling across the country for treatment. She and her husband rented a house, and the two of them switched out staying at the hospital with Olivia and staying at the house with their younger daughter Eva.

The family also received overwhelming support from a group of family and friends who rotated on a weekly basis to the east coast to help the Medici family.

But without the financial, physical, emotional and spiritual support that they received, Annalee said keeping a clear perspective on her child's condition would have been hard.

'One day you're a mom and the next you're a nurse, a physician, a pharmacist. I did all of Olivia's meds - IV and orally. It was such a huge responsibility to know that I am responsible for her health and her well being. It's hard enough just being a mom,' Annalee said.

The Olivia Medici Memorial 5K Run/Walk, which Annalee said should turn into an annual event, will benefit family support programs at the two hospitals where Olivia received treatment - the Duke University Hospital's Family Support Program and the OHSU/Doernbecher Children's Hospital.

Pre-registration for the race, which will be held Sunday, April 22, at 8505 Creekside Place in Beaverton, is $25 if prior to the race online at www.oliviaswish.com or www.racecenter.com. Registration is $30 the day of the race. The race starts at 9 a.m. Registration and check-in are at 7:30 a.m. Refreshments and festivities, including balloons and clowns, will begin at 9:30 a.m.

Annalee said the race was conceived as a way to thank everyone who supported the family in their quest to find treatment for Olivia and to find a way to continue to help other families taking on the responsibility seeking out treatment for their children.

'(The race) is about knowing that we are helping families faced by the same disease, faced by whatever disease,' Annalee said. 'It's a small amount of comfort that Olivia's memory is doing something for someone else.'