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Local family goes on first vacation with help from Make-A-Wish
By NATALIE MARTIN
A Vashon family with a child with a terminal condition will take their first vacation ever this month thanks to the Make-A-Wish Foundation.
Sara Hartness — who was born with a disorder similar to cerebral palsy — her parents, two young siblings and a nurse will take an all-expenses-paid trip to Disneyland.
“They are so totally excited,” said Tatum Hartness, Sara’s mother. “It will be a big adventure for everyone.”
Sara, who is 8 years old, was born with a condition that is considered unknown, Tatum said, but that presents itself similarly to cerebral palsy. Sara has the developmental functions of a 3-month-old, Tatum said. She is also blind and uses a wheelchair.
Tatum said some other children have been born with the same condition, which is often misdiagnosed as cerebral palsy at first. The condition, however, is still being researched and has yet to be defined.
“They’ve been researching it for few years,” Tatum said. “Basically there’s no handbook or guidelines for this one.”
For years, Tatum said, Sara has been in and out of the hospital, and she had a permanent tracheostomy when she was 6 years old. Since then, her condition has been more stable and she’s had far fewer hospital visits, but doctors don’t expect her to improve.
Sara’s grandmother, islander Georgia Hartness, nominated Sara for a wish from the Make-A-Wish Foundation, as did staff at the Seattle Children’s Hospital.
“They are a really, really awesome group,” Tatum said. “They put in for it as well.”
Since Sara wasn’t able to make a wish herself, her family decided on the Disneyland vacation after consulting with Make-A-Wish officials.
Tatum said they chose the trip in part because Sara’s condition has made it difficult for the family to travel. The longest trip they’ve taken is an overnight trip to the beach. Sara has a 12-year-old brother and a 5-year-old sister.
The Hartness family planned to take a train to southern California, and their nurse will accompany them on the wish.
The family and volunteers with Make-A-Wish held a farewell party last week at The Rock, which opened and served pizza on Monday just for the occasion.
Make-A-Wish Alaska & Washington, funded by private donations and corporate sponsors, including Disney, grants about 300 wishes a year to children facing life threatening illnesses.
AJ Thibeault, a Make-A-Wish volunteer who was at The Rock last week, said Disney wishes — trips to Disneyland and Disneyworld, as well as Disney cruises — are a common request. Such trips, he said, are meaningful for the whole family during what is usually a difficult time.
“These families have to go through some really tough things,” he said. “It gives them some time to separate themselves from that, have some fun and make some memories.”