SCN2A Warrior Challenge planned Sunday, Oct. 24, to support research

Looking to make an impact on research and support for his rare genetic disorder, Nathaniel “Bubba” Brown’s family is organizing a local walk fundraiser for the FamilieSCN2A Foundation.

Those interested in participating should plan to meet at the park shelter at Homesteaders Park at the Phillips County Fairgrounds on Sunday, Oct. 24, any time from 2-4 p.m.

Participants will walk, roll and stroll one time around the entire 1-mile bike/walking path that encompasses the fairgrounds. Refreshments will follow the walk.

Those who are unable to walk but would like to take part in the SCN2A Warrior Challenge through a donation may go to the donation link (runsignup.com/bubbasbrigade2021) for Nathaniel’s team, Bubba’s Brigade.

Nathaniel’s family includes his parents, Daniel and Alysha, and his older brother, Samuel, age 8. They moved to Holyoke just over a year ago.

FamilieSCN2A is an organization created by parents of children (like Nathaniel) diagnosed with rare forms of epilepsy and autism as a result of a change in the SCN2A gene.

The Browns humbly ask for community members to consider supporting the FamilieSCN2A Foundation. The donations will go directly toward the foundation’s mission, which is to improve the lives of those affected by SCN2A-related disorders through research, public awareness, family support and patient advocacy.

Last year, the Browns, along with family and close friends, participated in a virtual Warrior Challenge. This is their first effort at a big fundraiser like this that involves an entire community.

Nathaniel, 6, requires full-time care. SCN2A is a sodium ion channel gene located on chromosome 2. It encodes the alpha subunit of the voltage-gated sodium channels mainly located in the brain.

While that is an elaborate description, the Browns handle Nathaniel’s situation with care, concern, faith and love.

Through Nathaniel’s six years of life, the Browns have received answers to questions, support, positivity and encouragement from the FamilieSCN2A Foundation that has ­navigated them through this difficult journey.

The Browns acknowledge that they have had the blessed privilege and opportunity to attend two in-person Famil­ieSCN2A conferences to meet other families and their children affected by this same genetic abnormality. “We are honored to be a part of this special community of families scattered all across the world,” Alysha said.

Nathaniel’s story

Nathaniel Brown’s story began April 28, 2015, when he was born in Scott City, Kansas. He was a healthy, full-term, uncomplicated repeat C-section. Older brother Samuel, at age 19 months, gave his baby brother the nickname “Bubba” for lack of being able to pronounce “baby.”

According to his parents, Nathaniel was a quiet, content baby who enjoyed sleeping and snuggles.

But at 5 days old, he began experiencing seizures and was later diagnosed by Children’s Hospital of Colorado with having early onset infantile encephalopathy. In August 2015, a genetic test was performed to confirm he has SCN2A.

During his first year of life, the family navigated trips for multiple doctor appointments and treatment options. They also had to accept the depressing news that their boy was going to be handicapped and disabled for the rest of his life.

“We’re grateful to God that he has been seizure-free for over five years,” Alysha said.

Nathaniel is nonverbal, nonambulatory and wheelchair bound, relies on 100% 24/7 care, has cortical vision impairment and is G-tube fed, plus a list of other disorders.

His parents are quick to point out that these challenges do not define who Nathaniel is as an individual.

They describe him as his own little person, complete with dimpled, toothy megawatt smiles that light up a room.

“When Nathaniel is in an especially great mood, the joy and happiness he radiates quickly become contagious and warm the heart from the inside out,” his mom said.

He is still a snuggle bug and enjoys being around people and shaking hands.

A favorite pastime is being outside and going for strolls in his wheelchair around the neighborhood or around town in Holyoke.

Any support the community can give for the FamilieSCN2A Warrior Challenge will be greatly appreciated.