3 of 4 children in family have rare progressive disorder

MOLALLA, Ore. (KPTV/Gray News) – A family in Oregon is trying to come to grips with a devastating diagnosis after learning three of their four children have an extremely rare progressive disorder that doesn’t have a cure.

According to the family, the children, Mia, Ava and Hunter, who are 14, 10 and 4-years-old respectively, were recently diagnosed with Niemann-Pick disease type C.

The Mayo Clinic states “Niemann-Pick is a rare, inherited disease that affects the body’s ability to metabolize fat (cholesterol and lipids) within cells. These cells malfunction and, over time, die. Niemann-Pick disease can affect the brain, nerves, liver, spleen, bone marrow and, in severe cases, lungs.”

The children’s grandmother, Heather Davenport, said they are on a treatment called Miglustat.

“It helps slow the progression of the disease but early teens or early to late 20s is as long as they are going to live for,” Davenport said.

Family members say the kids are energetic and full of life.

“The little one, Hunter, is just so full of energy,” Davenport said. “Just all over the place. The teenager has the teenage attitude, what can you say? But she’s still so loving and caring. Ava is just carefree. She likes sports, she wants to get into football this year.”

“The lives of the Rose family will be forever changed,” the kids’ great aunt, Kathleen Rose, wrote in a GoFundMe post.

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