Jordan Rae Giles is a local four-year-old who got to lead a motorcycle ride around Smokey Point’s Sound Harley-Davidson on Jan. 26.
GIles has a mitochondrial disease known as Leigh Syndrome and employees of the local business and motorcycle riders from HOG Chapter #2053 joined together to give Jordan a day for just herself.
When Jordan was a baby there were many troubling signs regarding her health: unexplained vomiting, lack of motor control and lagging development.
Doctors couldn’t figure out what was wrong with her, and after two years of testing Jordan was diagnosed with Leigh Syndrome, a rare progressive degenerative disease.
Those diagnosed have a median life span of 5.5 years.
The syndrome can lead to blindness, deafness, seizures, motor control problems, loss of speech, breathing problems, liver problems and kidney problems.
Despite her health issues, Jordan has still developed a love of motorcycles, specifically the classic Harley-Davidson, which her father also likes.
“One day when we were leaving the Harley-Davidson store she saw a big group of riders down the street and told me ‘one day, I want to ride with a group,’” said Jordan’s mother Jessica Giles.
“Her dad used to tell her the difference in the sounds between the motorcycles, and when we were out and about she always listened and turned her head whenever she heard one,” she said.
One day a little more than a year ago Giles suggested they paint up her Minnie Mouse scooter to make it look more like a Harley-Davidson.
“She used up her piggybank money to buy some spray paint and stickers,” said Giles.
They ended up going to the Smokey Point Sound Harley-Davidson.
“She came in about a year ago and has always liked Harleys,” said Jen Owen, marketing and events manager with the store.
“She came into the shop and her mom told our employee the story,” she said.
That employee helped Jordan get some stickers and paint.
“He ended up bringing some extra stickers for her and asked us to come back next weekend,” said Giles. “And we started going up there almost every Saturday because Jordan had a lot of fun there."
Owen said that the store employees like to visit with Jordan when she comes around.
“The employees here all love her and we help her with her bike and give it some detail,” she said.
“She likes to count the wheels and gives the employees here hugs,” said Owen.
Jordan enjoys seeing the motorcycles at the store.
“One Saturday we were leaving the store and we saw a big group of bikers and she told me ‘one day, I want to ride with a group,’” said Giles.
Owen said that she had the idea to help make that happen, and they contacted the local chapter of the HOG riders to get together a large team of motorcycle riders for Jordan.
“They were all excited to do whatever they needed to do to make it happen,” said Owen.
“We were surprised and happy, and Jordan was just so thrilled,” said Giles.
They ended up getting together on Jan. 26, which Owen said was a sunny and nice day.
Jordan deals with some motor control problems, for instance having trouble pushing down the pedal on her scooter, but was able to do a lap around the Sound Harley-Davidson business, said Owen.
“The riders were super patient as we had to stop a few times for a break,” she said.
Owen said gathering all those riders next to the business caused a lot of noise, but Jordan was still happy to be able to ride with them.
“She was so excited. The Harleys were pretty loud but you could still hear her squeals of excitement over them,” said Owen. “It was a little overwhelming with the noise, but she was definitely living out her dream."
Jodran’s particular mutation of Leigh Syndrome has only been diagnosed 17 times in the world, with only three of those patients, including her, being still alive.
“There are a lot of different variations and each mutation is pretty rare,” said Giles.
“It takes more lives each year than childhood cancer,” she said. “Anything we can do to spread awareness is important.”
She suggests heading to the United Mitochondrial Disease Foundation at umdf.org for information or to donate to support research into mitochondrial diseases.
Giles also wanted to thank the local people who helped Jordan.
“I’m so thankful for the HOG chapter and Sound Harley-Davidson. We’re so blessed to be part of such a loving community,” she said.