Ashlyn Henkes of Lansing selected as 2019 Walk to End Arthritis youth honoree


Team #SuperAshlyn ... Ashlyn Henkes (front) of Lansing is pictured above with members of her team from last year’s Juvenile Idiopathic Arthritis (JIA) Walk. Ashlyn has been selected as a youth honoree for the 2019 Walk to End Arthritis being held May 18 in Cedar Rapids. Submitted photo.

Shining support ... A light-up neck brace helped provide Ashlyn Henkes with the support she needed during her early treatment for polyarticular juvenile idiopathic arthritis. She is now free of the neck brace and is said to be in medicated remission. Submitted photo.

Treatments in Iowa City ... Ashlyn Henkes of Lansing is pictured above receiving an ACTEMRA infusion at Stead Family Children’s Hospital in Iowa City. Such infusions used to require trips for the family from Lansing to Iowa City every other week but her treatment has progressed to receiving the ACTEMRA treatments at home and she now makes trips to Iowa City about once every three months for follow-up lab work. Submitted photo.

Local event this Saturday supports that cause

by Lissa Blake

Although 12-year-old Ashlyn Henkes is doing well now, the past three years have been a roller coaster ride of testing and treatments to keep her free of pain.

That’s because Henkes has polyarticular juvenile idiopathic arthritis, a genetic disease that affects 300,000 children in the United States.

Ashlyn is the daughter of Dustin Henkes of Monona and Esley Henkes of Lansing. She attends New Albin Elementary School and has one brother, Owen, age 16, and one sister, Isla, age nine.

Her problems started about three years ago, when her neck started to hurt. “I was to the point where I couldn’t move it to look around. Even looking up and down hurt. My fingers hurt to write,” said Ashlyn.

Ashlyn’s mother, Esley, said at first there were some subtle signs of Ashlyn’s condition, but they gradually got worse. “I noticed when I was trying to braid her hair, she couldn’t put her chin to her chest,” said Esley. “She would wake up in the morning and say, ‘Mom, my neck hurts.’”

Esley said she noticed her daughter’s neck movement becoming more and more limited. Then one day when she asked her mom to stop buying carrots for her afterschool snack because her jaw hurt, she knew it might be more serious.

“She would complain that her feet hurt. She had started elementary sports, so we took her to the podiatrist to get her orthotics for her shoes. We even went to a chiropractor. It got to the point where she couldn’t walk the two and a half blocks to school without crying,” said Esley, adding big brother Owen was great about helping her carry her backpack.

The family was doctoring in Lansing, when they requested physical therapy. When three visits to the physical therapist resulted in no improvement and raised more concern, the therapist, Angie Kramer, suggested she return to her doctor for a closer look. Returning to Gundersen Clinic, blood work revealed a positive ANA (antinuclear antibody) test.

This was enough to get a referral to Stead Family Children’s Hospital at the University of Iowa Hospitals and Clinic where pediatric rheumatologist Sandy Hong knew Ashlyn was in the right place. The results came back that she was suffering from a type of arthritis called polyarticular juvenile idiopathic arthritis. After more tests and an MRI, “It turns out Ashlyn’s arthritis was affecting 90 percent of her joints, with the exception of her hips and five of her toes,” Esley said.

Ashlyn’s arthritis was affecting her neck a great deal and required the expertise of neurosurgeon Dr. Arnold Menezes. Arthritis in her neck affected her C1 and C2 vertebrae leaving her at risk of a spinal cord injury.

“We immediately had to pull her from every sport. There was no jump roping and no biking. She was put in a neck brace,” said Esley.
 
GENETIC LINK
Esley said in order to get juvenile arthritis, it is suspected a child must have a genetic predisposition coupled with a triggering event. Both must take place.

“It can be a broken bone or the flu. In Ashlyn’s case, they think it was strep throat,” she said. “Technically, it could be something as simple as a vaccination - anything that turns the immune system on. Idiopathic means they don’t know for sure, but this is what makes the most sense now. This is why research is so important.”

TREATMENT
Ashlyn’s treatment has run the full gamut from Enbrel injections and ACTEMRA infusions for which she has had to travel to the Stead Family Children’s Hospital in Iowa City, to many home injections. Trips to Iowa City take six hours round trip plus three hours of treatment.

For over a year, Ashlyn and her family took that trip every other week. Today, she is able to take ACTEMRA at home and travel to Iowa City only once every three months.

“Our goal is to keep her immune system in place, so her immune system is not attacking her joints,” said Esley.

Esley added although Ashlyn has been a trooper through all of her treatments, she’s not afraid to let her mom or doctors know when something is amiss. “Once our pharmacy switched her methotrexate from preservative to preservative-free, and she could definitely tell the difference,” Esley said.

She currently takes folic acid to help prevent side effects of her injections of methotrexate and ACTEMRA. “Every three months she has to have some labs drawn to make sure the medications are okay with her kidneys and liver. She has been doing really well,” said Esley.

MEDICATED REMISSION
Esley said luckily the medications Esley is on are keeping her disease “quiet.” She can again play basketball and volleyball and is able to jump again, which Ashlyn said she missed. She no longer needs her neck brace and is able to participate in most activities associated with an active 12-year-old.

“The school has just been great coming up with some accommodations for her,” said Esley, adding they have provided an additional set of textbooks for Ashlyn, so she doesn’t have to carry them back and forth to school.

Ashlyn also has a special inflatable ball for a chair at school. “People are jealous,” joked Ashlyn about her chair.

“The school has just been amazing to work with. I couldn’t say enough good things about the school district. The kids have also been great. She wore a neck brace at school and never got teased or anything,” said Esley.

Esley added she can’t say enough about how great the community, school and their church, Our Savior Lutheran Church, has been to them.

FUNDRAISERS
Esley said in addition to the May 18 Walk to End Arthritis fundraiser, where Ashlyn will be honored as the youth honoree at Veterans Memorial Stadium in Cedar Rapids and even get her picture on the jumbotron, the Safe House Saloon in Lansing will host a fundraiser for juvenile arthritis benefiting the Arthritis Foundation this Saturday, April 27.

Esley, who today works at a bank in La Crosse, WI, used to bartend for Nick Hammell at the Safe House. “Nick participates in Bartenders for Charity. During the fundraiser, I bartend and the girls do the busing and they collect tips and donations. We raised $1,800 the last go-round,” she said.

Esley added all the money collected during the fundraiser goes toward research for arthritis. “Right now there’s actually a shortage of pediatric rheumatologists,” she said.

And although big pharmaceutical companies usually get a bad rap, Esley said Ashlyn’s treatment wouldn’t be possible without their help. “We’re lucky we have a co-pay option with her ACTEMRA. The whole juvenile arthritis community is dependent on these programs the manufacturers of these medications provide. Otherwise, these meds run between $2,000 and $30,000. No one can afford that,” said Esley. “This is why we walk for a cure.”

WHAT’S NEXT?
Ashlyn said spending time at the Stead Family Children’s Hospital in Iowa City has made her think about what she would like to do when she grows up. “They’re so nice there. They make your stay more comfortable there,” said Ashlyn, adding she would like to work there someday and help children.

HOW TO HELP
To assist in fundraising efforts those interested can come to the Safe House Saloon Saturday, April 27 from 3 -10 p.m. More information about that fundraising effort is available at Bartenders for Charity benefiting The Walk to Cure Arthritis on Facebook.

Donations also can be made to the Arthritis Foundation at arthritis.org search for team #SuperAshlyn. For more information about the Walk to Cure Arthritis, visit events.arthritis.org.