Island Fin Poke reaches out: ohana fundraiser
“Today (Thursday, March 21), Island Fin Poke is doing a fundraiser, Poke with a Purpose Aloha Give Back Day,” said Kristi Burkhalter, co-owner of Island Fin Poke, 11615 Parkside Drive. “From 11 a.m. ‘til 9 p.m., we are honoring World Down Syndrome Awareness Day.
“The proceeds are going to benefit the Molly Rader family,” she added.
“It’s huge; it’s wonderful to bring awareness about World Down Syndrome Day and also to help us offset all our medical bills,” said Molly’s mother, Amanda Rader. “It’s just a huge blessing.”
“Molly is a 12-year-old precious girl who lives with Down syndrome and met with a number of health issues this past fall,” Burkhalter said.
Those issues snowballed into the child being air-lifted from East Tennessee Children’s Hospital to Cincinnati Children’s Hospital in December.
“She and her mom have been living at Cincinnati Children’s Hospital,” Burkhalter said.
Burkhalter and Amanda, who both live in Maryville, are friends and serve on some service organizations together.
The illness started, simply, with a fever that did not go away.
Then, “in November (2023), Molly became really ill suddenly and ended up having to be flown by air ambulance to Cincinnati Children’s Hospital,” Amanda recalled. “She has a condition called HLH, which is hemophagocytic lymphohistiocytosis. The chances of getting it are one in a million, and it’s got a horrible mortality rate.
“She’s really lucky to be alive,” the mother added. “Cincinnati Children’s Hospital is one of the top HLH hospitals in the world.
“The doctors (at ETCH) were on top of it enough to recognize that, given her Down syndrome and other medical conditions she has, that she actually could have this HLH condition. Because the doctors at East Tennessee Children’s Hospital were very quick to think that this is what might be going on and to get her to Cincinnati as quickly as they did, that’s what literally saved her life.”
She said ETCH deserves credit because HLH “is one of the most under-diagnosed conditions anywhere.”
Regarding the family’s expenses, “we’re still in the process of seeing what insurance is going to cover (but the costs are) going to be astronomical,” Amanda said. “(Molly) was on the bone marrow transplant floor for three months.”
The child did not have a transplant, but Amanda explained that floor oversees HLH patients because HLH is a blood disorder.
The mom added the March 21 fundraiser “is going to help offset Molly’s medical expenses that were incurred with her care.
“She still has a long road ahead,” Amanda said. “We have to go back to Cincinnati every two weeks for infusions. She’s homebound, so she’s getting a lot of her services at home. She’s going to be in therapy for a long time. She had seizures as part of all of this, so she’s got right-side weakness.”
“With World Down Syndrome Day today, we thought it perfect that our East Tennessee ohana (Hawaiian for ‘family’) come together to honor those extra-special individuals who live with Down syndrome,” Burkhalter said.
“As you know, that extra means they have an extra chromosome on the 21st niche of their gene,” she explained. “So, we love to say that they’re extra-special.
“For me, these individuals are extra special (because) as a speech language pathologist, I’ve always loved giving back to individuals of all walks of life — but especially those with differences and disabilities.”
