Jacey's Race benefits kids with support, compassion

Sandpoint — It is not just the money raised through Jacey’s Race that benefits a group of young recipients each year, but the interaction with others who suffer from serious illness can have a positive impact as well.

Jacey’s Race board member, Karen McClelland, said her daughter Christina was a 2013 beneficiary. One of last year’s beneficiaries, Kiera Reed, was too ill to come to the race, so Christina helped deliver the donations and some gifts to the teen.

"Her mom said that seeing Christina, and how Christina has fought through and is doing well, that it really was a positive change-maker for (Kiera)," McClelland said. "… Just seeing other kids with life-altering illnesses and how they are doing, like Jacey, like Christina, inspired Kiera to kind of get out of that 'funk' that you can get in, and she is doing much better."

Jacey's Race is a non-profit organization that helps kids with cancer or other life threatening illnesses. Jacelyn “Jacey” Lawson was 4 years old when she was diagnosed with a stage IV Wilms' tumor. The first Jacey's Race took place in Boulder, Colo., in 2001, and when the family moved to Sandpoint, they moved Jacey's Race along with them.

Now, Jacey is cancer free, preparing to enter her senior year in college at the University of Utah, studying society and policy, gender studies and health. She is spending the summer as an intern in Washington, D.C., for public health and social impact. She and her family continue to run the race and help other kids like Jacey, so she plans to fly home on Saturday to be in town for the race on Sunday, and then fly back to continue her internship, McClelland said.

"She is happy and healthy and just plunging forward with life, trying to make positive changes in the world," McClelland said.

At the beneficiary dinner this week, McClelland and others involved in Jacey’s Race met some of the new beneficiaries and caught up with some of the youth from previous years. This year’s beneficiaries are 11-year-old Clara Falconer, 13-year-old Catalina Guthrie, 3-year-old Oliver Bond and 15-year-old Jared Kluesner.

Jared was unable to attend the dinner, McClelland said, because he is in active treatment for his cancer. He is diagnosed with Acute Lymphoblastic Leukemia. ALL is a cancer of the blood and bone marrow, in which the bone marrow makes too many immature lymphocytes.

Clara was helping with yard work at her home on Oct. 2 when she felt an intense pain in head, like she was being stabbed, McClelland said. She was taken to the emergency room and tests showed she had an abnormal formation of veins and arteries in her brain, arteriovenous malformation, and some of them had ruptured and bled. In order to relieve pressure from the swelling, the doctors removed the right side of her skull. She was in a coma for a few days, and when she woke up, she had lost function in the left side of her body, including her left eye. She couldn’t feed herself, sit up or walk.

Clara spent five weeks in Seattle, relearning those basic skills and was able to walk out of the hospital. In February of this year, they reattached the right side of her skull. The doctors also found a problem with her heart that will require surgical intervention. The treatment for AVM involves focused radiation to the abnormal blood vessels. Unfortunately, this may cause a loss of function in the left side of her body again, McClelland said. Clara enjoys roller skating and will start fifth grade in the fall.

Catalina is diagnosed with type 2 membranoproliferative glomerulonephritis. MPGN is a rare type of kidney disease that occurs when the body’s immune system functions abnormally. The immune system, which is responsible for fighting disease, begins to attack healthy cells in the kidney, destroying the function of the filtering units of the kidney. Catalina’s parents first knew something was wrong when they discovered blood in her urine, McClelland said. They took her to the doctors, and after a series of misdiagnoses, the discovered she had MPGN.

Catalina must undergo peritoneal dialysis for 10-14 hours every day. She is one of 13 children, and her siblings help her out. Through the course of this disease, Catalina has developed great empathy for others, McClelland said, and her strength has inspired Catalina’s mother, Cheryl, who was recently diagnosed with pancreatic cancer. Cheryl has watched how Catalina has faced her challenges with courage.

Oliver is diagnosed with hemophagocytic lymphohistiocytosis. People with HLH have cells of the immune system called T and NK cells that don’t work properly, McClelland said. These cells become overactive, causing too much inflammation. Ordinarily, these cells should destroy infected, damaged cells of the body. In HLH, the immune system begins to damage the patient’s own tissues and organs, including the liver, brain and bone marrow where blood is made. Oliver has undergone multiple blood transfusions, and will need two to three surgeries in the future to treat craniosynostosis, McClelland said.

Another story highlighted by McClelland was Natalie Rachels, who was a 2016 beneficiary. The 11-year-old was born with severe disabilities after her mom unknowingly passed on the cytomegalovirus to her while she was pregnant. Natalie’s parents Jessica and Patrick Rachels, were instrumental in passing Senate Bill 1016, which went into effect Saturday, July 1. The bill requires the Department of Health and Welfare to make the most up-to-date information available about cytomegalovirus in order to educate pregnant women regarding the risks to their unborn child of being exposed to the virus.

The family is also working with Home Depot on a wheelchair accessible swing for McNearney Park in Ponderay, which they hope to have installed in August.

Jacey’s Race is a community event to help local families with children currently being treated for cancer, life-threatening or severe illness. Jacey’s Race is a timed 5K running race, with prizes for the top three competitors of various age groups. There will also be a 1K walk/fun run for children and parents that will not be timed.

At the end of the race there will be tents set up with food and water, and free massages for racers. There will also be a jumping castle, clowns giving out balloons, face painting, and door prizes.

"We really want it to be fun for these kids," McClelland said.

The Jacey’s Race 5K begins at 8:30 a.m. July 9, and the 1K fun run is 9:15. The cost is $25 for the 5K and $15 for the 1K; children 12 and under are free.

Online registration is available at jaceys-race.com/register, and registration forms can be found at various locations around town as well, including the Alpine Shop, Bonner General Health, Arnie’s Conoco and more. Registration is available the day of the race at Sandpoint High School for an extra $5 per person.

The race is staffed entirely by non-paid volunteers. Via sponsorship and race entry fees, money raised will go primarily to families of children with cancer, severe or life-threatening illness, with gifts to Community Cancer Services and the Pediatric Department at Bonner General Health as well.

Mary Malone can be reached by email at mmalone@bonnercountydailybee.com and follow her on Twitter @MaryDailyBee.