3 of 4 children in a Molalla family have rare progressive disorder

MOLALLA Ore. (KPTV) - A family in Molalla 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.

“Devastated,” said Heather Davenport, their grandmother. “Just absolutely devastated. Confused. Try to figure out where to go, what to do, you know?”

See Also: Level 3 evacuations rescinded after fire extinguished in Molalla

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’.

“‘They are on Miglustat,” said Davenport. “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 and the kids’ great aunt, Kathleen Rose, describe them as 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.”

Following the testing, diagnosis, and current treatment, the family has been left $50,000 in debt. Rose started a GoFundMe to help and both are asking the community for support.

See Also: Portland prepping for dangerous heat with resources to stay cool, hydrated

“The lives of the Rose family will be forever changed,” Rose wrote on the GoFundMe. “As we come together, and ask for support and assistance from our family, friends, and the community in hopes to reach a goal of $80,000 to provide Mia, Ava, and Hunter with the necessary supportive medical treatment necessary to treat the symptoms of this disease, and hopefully slow the process down and give this family more precious time together with Mia, Ava, and Hunter.”

The family says next Tuesday at Papa’s Pizza Parlor in Corvallis, people can mention the Rose Children Medical Fund and the proceeds go towards helping the children. They also have a donation bank account with Northwest Community Credit Union called The Rose Children Medical Fund.

Copyright 2023 KPTV-KPDX. All rights reserved.