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Walk’n’Roll to raise awareness of rare disease

Walk’n’Roll to raise awareness of rare disease
September 08
07:07 2022

Sept. 25 is International Ataxia Awareness Day and a local single mother of four is doing her part to raise awareness and help find a cure for the rare disease which affects one’s ability to walk, speak and swallow, and that her son Daemond has been battling for the past five years. 

Paulette Shannon said for the first 13 years of his life Daemond was like all the other teenagers his age. He enjoyed spending time with his brothers and playing football and basketball. But all that changed around Daemond’s 14th birthday. “He had just turned 14 and we took him to TGI Friday’s for his birthday to eat dinner and instead of walking through the door, Daemond walked into the window and his eyes rolled back and he started having these tremors,” Shannon explained. 

Once at the emergency room, doctors said Daemond was suffering from seizures and prescribed medicine, but Shannon, who works in the medical field and is studying to become an RN (registered nurse), knew there had to be more going on. 

“They kept trying to tell me it was a seizure and I said that’s just not a normal seizure … that’s not normal for my son,” she said. 

The next day Shannon followed up with Daemond’s primary care physician. After a brief examination, doctors agreed with Shannon that it was more than just seizures. They immediately sent Daemond to Atrium Health Wake Forest Baptist (Baptist Hospital) for a brain scan. The scans revealed that Daemond’s cerebellum was surrounded by fluid. The cerebellum is the portion of the brain that controls balance, walking, standing and other motor skills.  

After several meetings, neurologists started asking Shannon about her family history and about Spinocerebellar Ataxia. 

Spinocerebellar Ataxia (SCA) is an inherited brain disorder that affects the cerebellum and causes problems with coordination and movement. Symptoms can include difficulty swallowing, loss of sensation in hands and feet and reduced bladder control. There is no cure for Spinocerebellar Ataxia.

Experts have discovered at least 36 different types of SCA, all with similar causes and symptoms. The numbers indicate the order in which experts discovered the associated mutations.The type of ataxia can only be determined through testing. 

After several tests Daemond was diagnosed with Spinocerebellar Ataxia Type 2. Genetic testing revealed that the disorder was inherited from Daemond’s father. Shannon said she recalls Daemond’s father talking about a disorder that he had that was hereditary but he didn’t have a lot of information about it. 

After Daemond was diagnosed, Shannon made it her mission to learn everything she could about the disorder. 

“He (Daemond’s father) told us that it was something he had that was hereditary, but he still didn’t get educated on it. I didn’t understand how serious this was until my son was diagnosed,” Shannon said. 

Overcoming Challenges 

As if battling a rare disease wasn’t enough, Daemond also had to deal with scrutiny from his classmates, who would tease him about his disorder. Shannon recalled several times where she had to get off work to deal with a situation at school. 

“I was always at school because they were picking on him and I got tired of my son crying,” she said. 

Although it was tough at times, with help from an assigned one-on-one aide, Daemond made it through middle school. When it was time to pick a high school, they were advised to enroll Daemond at a non-traditional high school, but Shannon wasn’t having it. 

“Of course they tried to put him in a special needs school but I said ‘No, Daemond is staying in public school,’” Shannon said. “I let them know that the school plan states that if he has a one-on-one (aide) he can stay in public school, so I think I want to keep him in public school. And I stood my ground and kept him in public school.”

Just like Shannon said he would, last year Daemond graduated from North Forsyth High School. Shannon said she makes sure Daemond still enjoys being a teenager. She said more than anything she wants Daemond to know that he will never fight alone.

“I have to let him know  that he will never fight alone, he will never walk alone. We’re in this together,” Shannon continued. “I don’t enable him from anything … he still rides roller coasters, he plays games, we go on vacation. A lot of people with a family member with a disability try to hide it; I embrace it.” 

Smiling through it all 

Today, just five years since he was diagnosed with SCA2, Daemond is confined to a wheelchair and requires around-the-clock care. He can no longer toilet himself or feed himself because he has issues swallowing. Three times a week he attends physical therapy, in addition to other appointments.

Despite the challenges and uncertainty he faces every day, Daemond still has a smile that can light up a room and a shining personality to go with it. He’s quick to point out a nice pair of Jordan’s and will let you know about his collection as well. Shannon said, “I tell anybody it’s not what you go through, it’s how you get through it.

“There have been several family members on his dad’s side who died from it, but like I tell Daemond, we’re not going to think like that.” 

Michael, Daemond’s younger brother, said he has never seen his brother down or feeling sorry for himself and that gives him strength.

“Most people probably couldn’t go through what he goes through. I’ve heard stories of people crying a lot and taking this really hard but I’ve never seen him do any of that,” he said. “If he did, he kept it to himself. He’s never come to me or her and complained about anything.” 

Educating Others

International Ataxia Awareness Day is a coordinated effort from individuals and Ataxia organizers around the world to help shed light on this rare disease. Since educating herself on Ataxia, Shannon has made it her mission to educate others, which is how the idea for Walk ‘n’ Roll To Cure For Ataxia came to life. The event is scheduled for Sunday, Sept. 25, from 10 a.m. until 2 p.m. in Corpening Plaza. 

Shannon said it’s important to know the symptoms and know what to look for because in most cases people don’t know they have it or that it runs in their family. Shannon said as a traveling CNA, she comes in contact with dozens of families dealing with Ataxia. 

“My message to the community is come out and support, learn something, because this can be hereditary in anybody’s family,” Shannon said. “There are over 150,000 people in the United States with Ataxia. 

In the future Shannon said she plans to start a nonprofit centered around spreading the word about Ataxia and trying to find a cure. She said this year’s walk is just the beginning.

“My goal is to start my own nonprofit organization and do something for people with Ataxia because I want to let them know they are not alone.”

For more information on the Walk ‘n’ Roll To Cure For Ataxia, email pshannon809@nullgmail.com. 

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Tevin Stinson

Tevin Stinson

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