When bad things happen to families in a small community like this one, that’s when members really come together to rally around those in need.

This time, it’s the Ryan family of Eagle River who is in need of community assistance.

The family is planning a fundraiser for their 10-year-old son, Jack, who was recently diagnosed with hemophagocytic lymphohistiocytosis (HLH), a severe systemic inflammatory syndrome that can be fatal. 

To help the family cover mounting medical and travel expenses incurred due to the disease that are not covered by insurance, a “Jack’s Crappy Adventure” fundraiser will be held Saturday, June 8, from 4 to 9 p.m. at the Veterans Center in Eagle River, located at 418 W. Pine St.

The family is seeking monetary donations and items to be used in the silent auction and raffles at the event. 

“Jack’s c-word adventure,” as it was dubbed by the 10-year-old boy, began Jan. 3, when he called his father, Jeremy, to pick him up from school. He was in the nurse’s office with a headache and dizziness. 

At the time, his sister, Kenzie, had been fighting a bad virus, so it was assumed Jack was fighting off the same thing. But as symptoms worsened over the next couple of weeks, the truth of what was happening was discovered to be much more serious.

During January, his symptoms didn’t abate but instead worsened, with Jack exhibiting double vision, feet-dragging, leg stiffness and numbness, and tingling in his fingers.

“Friday, Jan. 25, we came home from school and he was walking in front of me up the stairs. He swung his foot forward to step and began walking on the inside of his foot. I immediately knew he needed to go straight to the emergency department at Children’s,” said Jeremy.

Jack spent two separate week-long stays at the Children’s Hospital of Wisconsin in Milwaukee, one at the end of January and one at the end of February, due to significant swelling in his spinal column and two lesions on his brain that caused him to lose purposeful movement in his right leg and hands.

Using high-dose IV steroids both times, the swelling was reduced enough for his function to return sufficiently for Jack to go home. He underwent ongoing treatment of physical and occupational therapy to help him gain back motor skills.

After months of symptoms and multiple visits to doctors, Jack was finally diagnosed with the rare autoimmune disease at the end of April after his final lab test came back positive for HLH. 

To date, he has undergone multiple MRIs and lumbar punctures, ultrasounds, near weekly lab draws, genetic testing,

x-rays and numerous hospital visits. He has been making regular weekly trips to the doctor for lab draws, and had his most recent lumbar puncture May 9.

Following the lumbar puncture, doctors told the family that the HLH is considered active because macrophage cells (large white blood cells) were seen in his spinal fluid. Doctors said it’s important to get the HLH under control as they cannot do a bone marrow transplant with the disease active. 

“The doctors said that under a microscope you can actually watch the cells eating the other cells,” said his mother, Kim. 

Jack just started receiving chemotherapy treatment directly into his spinal fluid to stop the disease. He is currently not attending school as he needs to be kept away from germs and stay healthy.

“It is so hard to believe six months ago Jack was excelling in football and baseball and even helped drag his first eight-pointer out of the woods, and today he walks with a limp and has lost a lot of his strength and requires a mask in public to help him from getting sick,” said Jeremy. 

The only real treatment of the disease requires a bone marrow transplant, which doctors are seeking donors for now. His sister, Kenzie has been ruled out as a full match, but doctors said there are potential unrelated donors available. Jack could also benefit from the use of stem cells from cord blood, which is also being looked into.

This transplant means about six weeks in the hospital in Milwaukee and at least three months off school to recover afterward. Before and after the treatment, Jack will have blood work done twice a week to monitor him for infection and see how his blood is doing.

“Finally finding out Jack’s diagnosis was devastating,” said Jeremy. “But our friends, family and this community have proven to us that we are not alone. It’s overwhelming and leaves us all speechless.” 

“So many people coming together to love on us — family, friends, people I don’t even know — thank you so much,” said Kim. “My family is truly blessed. My heart is so full.” 

To donate cash or items for the fundraiser, contact Jeremy Ryan at (262) 308-5009 or jeremy@eliason­realty.com. Monetary donations can also be made by visiting caringbridge.org/visit/jackattackshlh or gofundme.com/jack-attack-fights-hlh. 

For more information on being a marrow donor, visit bethematch.org/support-the-cause/donate-bone-marrow.