Jacey's Race remains on track

SANDPOINT — Jacey's Race is about much more than running a race.

The nonprofit provides help to children who are battling cancer, as Jacelyn "Jacey" Lawson had, as well as other life-threatening illnesses. And each year, prior to the race, a beneficiary dinner is hosted by Jacey's Race board members meet the new beneficiaries and catch up with beneficiaries from previous years.

"I think all of us on the Jacey’s Race board feel very grateful to be able to connect with these beautiful children and their families," said board member Karen McClelland in an email to the Daily Bee. "Listening to their stories of resiliency is very inspiring. We all face difficult challenges, and it is comforting to know that people care and want to help."

This year's beneficiaries include 4-year-old Morgann Swansen and 18-month-old Adelin Starkey. The dinner was held Wednesday, and McClelland and the other board members learned about the conditions affecting the two youngsters. At 6 months old, Morgann was diagnosed with a rare condition that affects the development of the brain, she said, know as pontocerebellar hypoplasia type 2.

"Her older brother Garrett also had this disease, and he passed away when he was 7 years old," McClelland said in an email to the Daily Bee. "Children with this condition often pass away prior to 10 years of age. Sadly, Morgann was diagnosed with the disease the same day her brother Garrett passed away.

PCH2 is caused by mutations in a gene and is inherited in an autosomal recessive manner, meaning both parents must have the recessive gene. Her mother Attea, is the only person in the world who has two children with this disease, McClelland said. Treatment is supportive and based on the signs and symptoms in each patient. Morgann is nearly blind, and only has 20 percent of her hearing in one ear. She suffers epilepsy and seizures due to the progressive disease, McClelland said, and uses a feeding tube to eat.

Adelin was diagnosed with hypobiplastic left heart syndrome when she was an infant. HLHS is a severe congenital heart defect in which the left side of the heart is underdeveloped, McClelland said. She underwent open heart surgery at one week old, and again at 3 months old. She will need another open heart surgery when she is 3 years old.

"Adelin has an older brother and two older sisters, whom she tries to keep up with," McClelland said.

In catching up with previous beneficiaries, McClelland said Mariah Lauzon, a 2014 beneficiary who was diagnosed with Hodgkin's lymphoma when she was 13, is now in cosmetology school. Amber Staffiero, a 2015 beneficiary who suffers from thalassemia major, turned 15 on Friday and is hopeful that in five to 10 years, all thalassemia patients will no longer need blood transfusions every three weeks, McClelland said. 

Natalie Rachels was a 2016 beneficiary, and her parents were able to help pass an educational law through the Idaho Legislature regarding cytomegalovirus, intended to provide education for mothers about this potentially dangerous virus, McClelland said. CMV is one of the few viruses that can pass through the placenta to a pregnant woman's unborn child, and can cause developmental problems. The education law points out that it is important for pregnant women to avoid common ways for the virus to be spread, such as sharing food, drinks, and toothbrushes with young children, kissing a child on the mouth or putting a child’s pacifier in their mouth.

Clara Falconer, a 2017 beneficiary, underwent a heart surgery last summer, McClelland said, as well as a procedure to protect part of her brain with a plastic skull. A 2016 beneficiary, Kiera Frazier-Reed’s mother shared that attending the Jacey’s Race beneficiary dinner was Kiera’s first outing in six years, McClelland said. Kiera suffers from superior mesenteric artery syndrome, a digestive condition that occurs when the small intestine is compressed between two arteries causing partial or complete blockage.

"Kiera’s mom Jodi got up to talk about what Jacey’s Race means to her," McClelland said. "Even though Kiera was too sick to leave the house when she was a beneficiary, the knowledge that people cared about her helped her with her healing, she gained some weight, and was able to join us Wednesday night. Jacey’s mom Nanci got teary eyed and said, 'this is why we do what we do.' Nanci understands the power of having a community behind you. She has always told me she felt Jacey’s Race was a turning point in Jacey’s recovery."

Jacey, obviously the first beneficiary of the race, was also in attendance at the dinner. Jacey 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 and she and her family continue to run the race and help kids with cancer and other life-threatening illnesses each year.

"As our annual Jacey's Race Beneficiary Dinner came to a close (Wednesday) night, I sat with a loss of words and a body raging with emotions," Jacey said in an email to the Daily Bee. "There are truly no words to describe the feeling of being in a room full of survivors, warriors and heroes. Life throws all sorts of challenges and miracles our way and often times while these moments do grant us the experience to learn, fight and grow, they can also grant us with the unfortunate beast of isolation. As I stood amongst almost one hundred beings all ushered into what one can only call a unique lifestyle, the one and only feeling not present was that of isolation. I am so humbled to know and to be introduced to the strongest people I could ever imagine meeting through Jacey's Race. Through this event I can only hope that we are creating a community that not only provides resources and support, but one that provides a sense of peace for the angels among us."

The Jacey’s Race 5K begins at 8:30 a.m. July 8, with the 1K fun run at 9:15 a.m. 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 Fleet Feet Sports. Registration is available the day of the race at Sandpoint High School for an extra $5 per person. Registration and check-in for runners begins at 7 a.m. on race day.

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