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Dawson sisters Hanna, 12, and Morgan, 15, are going to DisneyWorld with their parents, thanks to the Children’s Miracle Network. Morgan donated bone marrow to help treat Hanna’s disease, called Hurler’s syndrome. Bob Pennell / Mail Tribune photo - Bob Pennell

Living a challenge

Twelve-year-old Hanna Dawson of Grants Pass is one in 250,000 children who are born with a rare disease, Hurler's syndrome, that keeps her body from breaking down starch, leaving it to rampage through her body, causing an array of ailments.

Since age 2, the spunky Hanna has been getting treatments at Rogue Valley Medical Center, which had to get specialized equipment for exotic enzyme treatments and train staff how to use it — all of which gets supported by the Children's Miracle Network.

Today in Medford, Hanna will be honored as the annual Children's Miracle Network Champion for Oregon, an honor that will see her and her family sent on an all-expenses trip to DisneyWorld in Florida, then a tour of the nation's capital and lunch with Oregon's members of Congress.

"The disease has made life very challenging for us," said her mother, Amy Dawson, a teacher's aide at Madrona Elementary School. "You dig in and do what you've got to do."

Hanna's sister, Morgan, 15, gave bone marrow early on in treatment "so it could teach (Hanna's) body to produce the genes and enzymes she needed in her blood," Amy said.

Hanna's father, Darren Dawson, a security specialist at Three Rivers Community Hospital in Grants Pass, says, "It's been a unique situation for Morgan and she's proven what a great sister she can be."

Hanna must go to RVMC, the Children's Miracle Network-designated hospital for the region, every two weeks for immunization treatment, said Morgan.

"She's very spirited and a good person — a pit bull of a person."

The girls were at Madrona Elementary School Thursday as part of their 4-H work, in which they have raised cattle and chickens. Hanna today will be honored by Bob Seus, owner of Ace Hubbard's Hardware in Medford. The Ace corporate network, a major supporter, has raised $46 million for CMN since 1991.

The entire family will go to DisneyWorld on Oct. 19, along with the "champion" of the nonprofit CMN from each state.

"I'm very happy about going," said Hanna. "In Florida, you get hot and sweat and meet all the other kids — and I'll be happy to get out of school."

Hanna's treatments at RVMC involve therapy with the drug Aldurazyme, which helps "flush out" the remaining starch in her body, said her father. She is treated with enzymes from ovaries of hamsters, which very closely resemble the enzymes missing from her body, he said.

"It's a true life challenge," he said. "Events for us that are simple, like turning a doorknob, these are things she has to overcome with ingenuity, using both hands."

Those wishing to donate to Hanna's treatment can donate through Ace Hardware; the money goes to hospitals that treat children under the nonprofit CMN, said Seus.

John Darling is a freelance writer living in Ashland. Email him at jdarling@jeffnet.org.

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