Shayla Bee Fund aids youngster's journey with rare disorder

A 3-year-old with local ties received a groundswell of support from near and far last Saturday.

Camden Larsen, grandson of Jeff and Krista Wohlert, of Hartley, was adopted into the Shayla Bee Fund family. The local charity provides support to northwest Iowa families who have children dealing with medical issues, which was a welcomed surprise for Camden's parents, Brooke and Dane Larsen.

"We all shed some tears when we found out we were accepted," she said. "It was something that we never thought would be us. We are so grateful to be a part of the Shayla Bee family and can't wait to make connections with other families, past and present."

Camden was diagnosed with an adenylosuccinate lyase (ADSL) deficiency this summer after extensive testing. The condition is a neurological disorder that causes brain dysfunction leading to delayed development of mental and movement abilities as well as behaviors that affect communication and social interaction.

Though Camden has been improving following the diagnosis, the process of actually receiving it was an arduous one for the Larsens.

When Camden was 1, Brooke and Dane noticed their son's development was delayed. They started working with in-home physical therapists from the AEA before visits were halted by the COVID-19 pandemic. After sessions resumed and Camden's issues persisted, his doctor recommended taking the youngster to a neurologist to rule anything out.

After X-rays and chromosome tests found no physical irregularities or other abnormalities, Camden continued physical therapy with limited results. Eventually, his doctor ordered a test of all 20,000 genes in his body, which flagged the ADSL deficiency that would later be confirmed by a blood and urine test.

While the news would be hard for any family to accept, it came with a silver lining.

"We are thankful to say Camden has a very mild case of this," Brooke said. "While he is developmentally delayed he is making great progress and doing great things."

Camden started walking in August at age 3 ½ and "hasn't sat down since," according to his mother. His speech has grown significantly during the past four months as well.

In some ways, Camden's diagnosis came as a relief to his parents.

"It's just nice having answers instead of having all negative tests and not knowing why our 3-year-old won't walk," Brooke said.

As part of the Shayla Bee family, the Larsens will receive monetary support and other resources to help with Camden's medical needs. According to its website, the Shayla Bee Fund was created in 2006 with the mission of reducing financial burdens on parents so they can "place their focus and energy on loving and caring for their child." The charity has helped more than 225 families since its founding, and the Larsens were eternally grateful to be selected.

"The resources and support will be nice going forward," said Brooke. "Just even having the emotional support from people who do not necessarily have the same thing as Camden, but just medical needs in general, will be nice."

Camden receives physical, occupational and speech therapy in Orange City once a week. Outside of those obligations, he's as busy as any other 3-year-old. He enjoys anything sports-related and you can always find him with a ball in his hand. He also loves dinosaurs and munching on snacks, his mother noted.

Brooke, a 2009 Hartley-Melvin-Sanborn High School graduate, is a stay-at-home mom while Dane is employed as the store manager at Hy-Vee in Sheldon, where the couple resides. They have two other sons, Nolan (7) and Maverick (eight months).

The couple was glad to finally have some answers for Camden and looked forward to helping others.

"We, along with our families, will definitely be looking for ways to pay it forward," Brooke said.