Rockford boy battles nervous system disorder, benefit planned at Delano American Legion Saturday, Sept. 13
By Jen Bakken
Hunting big game is Brent Swanson’s passion, but Neurofibromatosis Type 1 (NF1) is his reality.
As a 2-month-old baby, Brent was diagnosed with NF1, a disorder of the nervous system that causes tumors to grow around the nerves.
Though he has been able to hunt for black bear as well elk and deer, he has spent much more time in hospitals and at doctor’s offices.
Over the years, Brent has developed an abnormal accumulation of cerebrospinal fluid, partial paralysis on one side of his body, three inoperable fusiform aneurysms in his brain, hypothyroidism, a growth hormone deficiency, and multiple cysts within his brain and along his spine.
As if this list isn’t extensive enough, he also suffers from blindness in the right eye, and the visual fields have decreased in his left eye. But none of this stopped Brent from hunting with his dad.
“He’s my big game hunter,” said his proud father, Steve Swanson. “While bear hunting in Wisconsin, he couldn’t walk anymore, and we had to lift him through the brush to shoot the bear.”
Hunting trips have been made possible for Brent by places such as Kippenberg Creek, a non-profit organization that provides hunting trips, fishing trips, and other outdoor activities for children with life-threatening illnesses without any cost to the children or their families.
Brent may seem a young man of few words until the conversation is about hunting, playing X-Box, participating in adaptive sports, or watching WWE wrestling. He even sets his alarm on Fridays to make certain he doesn’t forget to watch.
“I love wrestling, and for hunting elk, I use a 338 Winchester Magnum,” Brent said with a smile. “And for deer or bear, a .243.”
As a junior, he will return to Mound-Westonka High School this fall.
“I really like computer class and I like to help with the yearbook,” Brent said. “I play adaptive sports like soccer, floor hockey, and softball.”
For 10 years, Brent and his parents, Steve and Dawn Swanson, have called Rockford their home. He also has two older sisters and is a proud uncle.
It is surprising there has been much time for fun with the number of medical procedures Brent has gone through, including chemotherapy, radiation, surgeries, more than 50 MRI scans, CT scans, gait analysis studies, and extensive eye exams.
He wears a leg brace and foot insert and has had physical therapy. In hopes of stopping the deterioration of his visual fields, he went through hyperbaric oxygen treatments at Hennepin County Medical Center.
Throughout it all, Brent has managed to volunteer his time through organizations like Hope Kids. He also spent the past four years on the youth advisory council at Children’s Hospital.
“He has really given back. He helped to get new menus for children staying in the hospital,” said Dawn Swanson. “Answering machines in patient rooms, and also helped make a Minnesota Wild play room for older kids.”
Brent and his uncle, Mac Murray, have helped raise funds for Camp Make-A-Dream in Montana, a cost-free camp for children, teens, and young adults with cancer.
Giving back is something he strives to do, but Brent and his family have many needs themselves. Insurance does not cover all of his needs, and they are getting close to the cap for medical benefits, which they are hoping they do not reach before he turns 18 years old.
With this in mind, a spaghetti dinner and silent auction benefit has been planned for Saturday, Sept. 13 at the Delano American Legion. The dinner will cost $8 for adults, $5 for children, and take place from 5 to 8 p.m.
The silent auction will be from 5 to 7:30 p.m., and will feature many items including gift certificates to David’s Photography in Monticello, KD & Company, Red Lobster, theme gift baskets including BBQ, Creative Memories and Party Lite; golf rounds at Eagle Trace in Clearwater, handmade flower planters, Minnesota Vikings tickets, and even a truck load of quality dirt.
The benefit is co-sponsored by Thrivent Financial for Lutherans, and donations can be made at any TCF bank.
For more information on the benefit, visit www.brentbenefit.blogspot.com or e-mail firstname.lastname@example.org.
To keep up to date on Brent’s progress, visit www.caringbridge.org/visit/brentswanson.