Motorcycles on Main to benefit Simpson family
Published 3:16 pm Tuesday, June 18, 2019
Do you “have the ‘baddest’ bike in town?” Motorcycles on Main is inviting you to come out and “prove it” by showing up at the Bike Show and Benefit for Gunnar Simpson. Motorcycles on Main will take place on June 29 from 1 until 9 p.m. on Main Street in Pineville.
Gunnar Simpson celebrated his third birthday on Dec. 1, and he has a very rare condition known as Trisomy 18.
“If you Google it online it will tell you that most kids with Trisomy 18 die in the womb or die when they’re born,” his mother Crystal said. Gunnar is now three.
Crystal was about 20 weeks into her pregnancy when she found out that he had Trisomy 18. She continued to see her regular doctor in Harlan until her blood pressure got too high, and she was sent to the University of Kentucky. There, doctors checked on Gunnar and discovered his heart defects.
Doctors also were unable to get Crystal’s blood pressure under control, so they had to do an emergency C-section and delivered Gunnar at only 2 pounds 8 ounces. He was kept in the NICU (Neonatal Intensive Care Unit) at the University of Kentucky for more than five weeks.
“It is a chromosome disorder,” Crystal explained. “Instead of having two chromosomes, he has three —an extra eighteenth chromosome. He also has heart defects and lung issues, and clenched fists. He can open them a lot better now. He also had a clubbed foot and had surgery on that.”
Gunnar is nonverbal at the moment. He uses a Tobii Dynavox communication device which is an eye gaze system. If he looks at something, he can tell you his wants and his needs.
Gunnar has no hearing in his left ear and moderate to severe hearing loss in his right ear.
“So he wears hearing aids in the right ear. They were in both ears but over time the nerve in the left ear just got worse,” Crystal said. “He is actually being considered for the cochlear implant.”
Gunnar recently had knee surgery as well because his knee was dislocated.
“They had to take a little bit off the bone,” she said. “Shorten the bone a little bit, and put a metal plate in for the kneecap where it needs to be.”
He has cortical vision impairment and he is a little nearsighted. He has low muscle tone and cannot remain sitting up on his own, although he can sit up for a couple of minutes by himself.
Crystal quit her job to stay at home with Gunnar to be able to take care of him and to take him to his therapies and various appointments.
Gunnar goes to Corbin for outpatient therapy once a week and goes to UK for speech once a week. He sees a chiropractor, a speech and physical therapist and a vision therapist once a week at home.
The first year and a half the family spent a lot of time in the hospital with sickness.
“He has gotten a lot stronger as he’s gotten older,” Crystal said. “I try to keep him in as much as I can in the winter months because his allergies act up and he end up in the hospital.”
She pointed out that he’s spoiled rotten. Gunnar is the youngest of five siblings. His oldest brother, Cody, is a senior in high school. His sister Jasmine is a freshman, brother Jacob is in the fourth grade, and brother Tanner is in second grade.
The Simpsons are optimistic about Gunnar’s future.
“There are so many kids out there, some can walk and talk,” Crystal said. “There’s a little girl in North Carolina that is six months older than Gunnar. She’s not verbal, but she uses the eye gaze system and if you tell her to pick the square, she’ll reach and pick the square. So, they can learn to do things, it’s just how hard you try. It depends on the parents.”
Gunnar has a wheelchair and uses gate trainers and will continue work when his knee heals. He is G-tube fed but does some oral feeding. He is going to be home-schooled after he turns three in December. A few things that Gunnar enjoys are lights and music. His favorite shows are Paw Patrol and Mickey Mouse.
All proceeds from the upcoming Motorcycles on Main will go to help the Simpson Family with medical expenses.
The cost will be $20 for a spot in the Bike Show. There will be lots of family fun starting at 1 p.m. There will be inflatables, food, music, crafts, and vendors.
All riders and motorcycle clubs are welcome, and this event is not sponsored by or affiliated with any motorcycle club.
The bike show will begin at 2 p.m. with judging and awards taking place at 6 p.m.
There will be a bike parade with the winner for the best overall bike leading the pack, and it will take place at 6:30 p.m.
The music and food will continue until 9 p.m.
To enter your bike or to reserve a spot as a vendor, you can call 606-499-6811 or 606-499-6810.
You can also check out their Facebook page by searching for Motorcycles on Main. The event will be held rain or shine.