Honoring Hayden

She’ll never be able to adjust to the diagnosis of a rare genetic disorder her daughter Hayden received just weeks before she died.

“She had been diagnosed with Angelman syndrome about a month before she passed,” Kimball said, recalling what the doctor told her before revealing Hayden’s diagnosis. “He told me what she has is not life threatening. It will not shorten her life span.”

That wasn’t the case.

While it wasn’t the disorder itself that took Hayden’s young life, it was a component of the condition that only affects 1 in 15,000 children worldwide. Still unfamiliar to many in the medical community, AS is a neuro-genetic disorder characterized by severe intellectual and developmental disability, sleep disturbance, seizures, jerky movements, frequent laughter or smiling, and usually a happy demeanor. People with AS also produce an abundant amount of saliva, Kimball said

“Her pediatrician in Duluth prescribed a medication to stop the drooling,” Kimball said. “The insurance company and I were battling back and forth because technically she needed to be 3 years old for them to cover the medication.”

But Hayden would never take the medication.

On Aug. 22, 2014, Kimball answered a phone call no parent ever wants to receive. On the other line was Kimball’s husband, Kyle. He had just called 911. He couldn’t wake Hayden up from her nap and she was being rushed to the hospital. Tears welled in Kimball’s eyes as she recalled the worst day of her life.

“She aspirated on her own saliva in her sleep,” she said. “I fell to the floor when they told me she was gone. It’s awful.”

Raising awareness

The tragedy left Kimball and her family feeling broken. A house once full of Hayden’s bright smiles and laughter was a suddenly dark and quiet.

“She was just so perfect in every way,” Kimball said. “Even when Hayden was having a bad day, she was happy.”

Through the grieving process, Kimball has decided no parent should suffer the pain she is feeling.

“I need to do something about it,” she said.

In an effort to bring awareness to AS, Kimball is partnering with the AS Foundation for a walk in International Falls to raise money for research.

Scheduled for May 16, the walk will start at Smokey Bear Park and end across town at Kerry Park. Participants will need to register at Smokey Bear Park anytime from 11:30 a.m. to 12:30 p.m. and the walk will begin at 1 p.m., Kimball said.

“I’m doing this to honor my daughter, but to also bring awareness so that what happened to her doesn’t have to happen to someone else,” she said.

Awareness could be the key. According to the AS Foundation website, because of its genetic relationship to autism and other disorders, many researchers believe that curing Angelman syndrome will lead to cures for similar disorders. Research is on the cusp of potential treatments to reverse the debilitating symptoms of the syndrome.

“Sometimes you have to take a step back from the great big things and focus on the little things,” Kimball said. “With more research and awareness, doctors won’t have to Google Angelman syndrome to find out more about it.”

Knowing more

AS is often misdiagnosed as cerebral palsy or autism due to lack of awareness. Hayden fell into that category. Kimball said she struggled for almost a year for answers as to why her daughter had developmental delays.

“Doctors told me she’d catch up, but I knew something was just off,” she said. “By 12 months, she still wasn’t walking or crawling. She could get around, but not like she should have.”

The other personality feature Hayden had was she was always happy. Too happy, Kimball said.

“Don’t get me wrong, I loved having a happy baby,” she said with a smile. “But she was just excessively happy.”

After a Duluth pediatrician diagnosed Hayden with cerebral palsy, Kimball said she wasn’t convinced.

“Her brain scans came back normal, so I didn’t understand how they could tell me she had something that was caused by abnormalities in the brain,” she said.

A pediatric neurologist then took on Hayden’s case. After several tests, all the factors pointed to Angelman.

“He explained it was the chromosome and it was a deletion or a mutation of that chromosome,” Kimball said. “A second test showed she had both the deletion and mutation.”

Team Hayden

Kimball said most “Angel children” never walk and will have very limited verbal skills. She admitted to being angry and frustrated she’ll never get to see if Hayden could have defied the odds.

“I have no doubt she would have walked,” she said. “It’s really hard to go through this.”

But planning and organizing the walk event is helping.

“I am proud of this community and I know people are going to want to help,” Kimball said. “So far, the response has been so wonderful and I’m excited to see what we can do with the walk. We have formed Team Hayden to get her story out there to share with others.”

Donations will be put toward research, but people have the option to select how their donations are disbursed, Kimball said.

“I’m just so grateful of everyone in advance,” she said. “We are gonna beat (Angelman syndrome). We need our angels here, with us.”