Redby boy’s wish for trip comes true

“Last year they (LifeFlight) flew him out 14 times” to a Fargo, N.D., intensive care unit, said Adelma Oakgrove, Frank’s grandmother.

But now, Frank, 7; his parents, Nicole and Donald Brun; sister, Melissa, 11; grandmother Adelma and cousin Kyleisha Garrigan, also 7, will take off for Orlando, Fla., courtesy of the Make-A-Wish Foundation of Minnesota.

There, the family will pick up the rental car Make-A-Wish reserved for them, tour Walt Disney World and play at the beach. During their vacation, they will stay in the Give the Kids the World Village.

During a Tuesday send-off party at Red Lake Elementary School, Frank said he looks forward especially to “petting a dolphin” and swimming in the ocean. The family will wear special Make-A-Wish badges so they can jump to the head of lines for Walt Disney World rides.

“He chose Orlando, and they made his wish come true,” said Adelma.

Mary May, a volunteer with Make-A-Wish, gave Frank a cushy pillow to make his flight comfortable. She said she had a niece and nephew who had been served by the organization, so when she retired she chose it as a volunteer opportunity.

“Frank’s name was submitted to Make-A-Wish by his doctors in Red Lake,” May said. “His criteria for Make-A-Wish is life threatening or terminal.”

Frank was diagnosed about two years ago with hereditary angioedema, a rare disease of the immune system. People who live with HAE suffer internal and external swelling and pain.

“It’s life threatening because if you have it in your throat, you can’t breathe,” said Indian Health Service Lt. Commander Ellie Morin, one of Frank’s health care providers at the Red Lake Hospital.

Nicole said her son’s HAE shows up mostly in his eyes. Frank just said, “I get puffy.”

The disease is familial, and Frank’s father was also diagnosed with HAE when he was 4-years-old. He said several of his relatives also live with HAE, but he had hoped the disease would skip a generation.

Children of a parent with the disease have a 50 percent chance of inheriting the defect, and the disease affects between one in 10,000 to one in 50,000 people worldwide, according to the HAEHOPE website.

However, Morin said about 40 people among the 8,000 who live on the Red Lake Reservation have HAE. Because the disease is so prevalent in the close-knit community, she began holding annual informational conferences and a support group for patients and their families.

“When I first did the support group, we did family trees,” she said.

She said medications can help control the swelling (edema), and Frank has to be infused twice a week to keep his attacks down.

Before the second-graders, their teacher, Liz Graves, and Frank’s family and friends dove into the pizza, the Rev. George Ross of St. Antipas Episcopal Church in Redby gathered everyone holding hands in a circle. He prayed for safe journeys and healing powers.

“We’re all family,” he said. “The family of Frankie.”

http://www.bemidjipioneer.com/event/article/id/100037021/