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Tuff Luck Fun Run helps families in community

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MORRIS – Carter Fults was busy at the dining room table with his spelling homework when I recently visited him at home in Donnelly. Spelling, along with physical education – especially kickball – are his favorite school subjects.

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When he’s not in school, Carter loves to be outside. “When my dad is home from work, we like to play football or baseball.” Carter also loves to ride his bike and play ice hockey.

A typical 10-year-old, for sure. Well, not exactly.

Carter is one of three young people chosen to benefit from the Second Annual Tuff Luck Fun Run to be held Saturday, June 7. In addition to Carter, this year’s run will benefit Jaxon and Hayden Knick of Ashby. The run raises money to benefit children and others who have health related difficulties or, simply, unfortunate luck.

The son of Joe and Jen Fults of Donnelly, Carter was born with a spinal cord defect and is paralyzed from the chest down. He has had multiple surgeries since he was a toddler, most recently two hip surgeries in the last two years.

“We make frequent trips to St. Paul and Minnetonka for appointments with six different specialists at Gillette Children’s Hospital,” said Jen, in addition to regular visits to Alexandria for physical and occupational therapy. “Continued appointments and possible surgeries will be a part of Carter’s life for the foreseeable future.”

Carter has mastered the use of a power wheelchair to jet around the house, at school and outside. “Kids at school help me if I drop something or like the other day when I needed to turn in my homework and my chair was charging.”  He has a joystick-controlled track chair for outdoor use year-round, along with a three-wheeled bike built by his dad and counter balanced to accommodate Carter’s special needs.

“Dad finds a way,” said Carter, who also plays hockey in his motorized wheelchair with the Minnesota Special Hockey League. No surprise, then, that his favorite video game is NHL 11.

Joe has owned Fults Repair in Alberta for three years and also farms with his dad, Steve. In addition to managing the Fults home, which also includes seven-year-old daughter Cassie, Jen makes the arrangements and drives Carter to and from the many necessary doctor and therapy appointments.

“I need to be available sometimes at a moment’s notice,” said Jen. “In addition to transportation costs, we’d like to do some remodeling at home to accommodate Carter’s wheelchair.”

Jaxon, 12, a son of Andrea and Jeremy Knick, was diagnosed in 2006 with Systemic Juvenile Rheumatoid Arthritis (Still's disease). The rarest form of JRA, it not only affects joints, but also organs. During the last eight years he has been on a variety of medications, monthly infusions and cortisone injections. His most recent challenges include neurological and other problems with his adrenal glands. An increase of cerebral spinal fluid around his brain cause him to be very lethargic, and experience bad headaches, confusion and dizziness. Jaxon has endured many trips to the Mayo Clinic in Rochester and missed months of school.

Hayden, 8, was hospitalized for 12 days in the same month that Jaxon was diagnosed, with Transverse Myelitis, a rare autoimmune disease that paralyzed him from the chest down. With the help of medication and physical therapy, he made almost a full recovery, although his bladder was permanently damaged. He also needed a full bladder augmentation in 2012, which led to some other complications in the months to come. He will be having another surgery in July to repair his bladder.

Both Jaxon and Hayden love sports, especially basketball. “Jaxon also likes to read, play the saxophone and enjoys recess,” said Andrea. “Hayden is in the second grade. Math is his favorite subject along with reading and physical education. Jonah, 10, is in fourth grade, and, in addition to art and math, he also loves to read.

“Jaxon is an amazing big brother,” said Andrea. “He has always been a calm, easy-going guy, and really keeps the peace when all three are together. Jonah has the most tender heart, making sure Jaxon has what he needs when he is in pain. He also gets very concerned for his brothers. He is the healthy one stuck in the middle, which has been hard for him. Hayden is the youngest so of course he thinks he should have all the attention. But he is good at taking care of his brother.”

Through it all, the Knicks feel blessed to have the support and encouragement of their Ashby community.

“Ashby is a wonderful place to live! Our friends from Ashby, along with our church family at Bethel Lutheran Brethren Church in Fergus Falls, held a benefit on May 17. There have been SO many people who follow our story and pray for us. Our family has encouraged, supported and helped in many ways; we wouldn't have made it through these last eight years without them!"

Jeremy is the first grade teacher at Ashby Public Schools and also the head boys’ basketball coach. Andrea is primarily a stay-at-home mom – “it has been essential with all of [the boys’] medical needs, appointments and medications. Keeping all that going is a full time job.” Andrea is also the head volleyball coach, and loves that outlet during the sport’s short season.

“I think it is easy to say that we all wish for the boys to be completely healthy boys, but we are SO thankful for who they are, and that we have them in our lives,” said Andrea. “When Hayden was diagnosed we had to come to terms with possibly losing him, then we had to deal with the possibility of him never walking again. But watching him run, jump and play is amazing! We are so thankful for that miracle!

“As far as Jaxon goes, both Jeremy and I wish we could take his pain for him. We wish daily, as we watch him hurt, or limp around, or not be able to go outside with his brothers, that he would just be able to be a normal kid and be able to do what normal kids do!”

Now in its second year, the Tuff Luck Fun Run grew out of a casual conversation among friends Tom Blume and Todd Kemper of Herman.

“We were just sitting around talking,” said Blume. “We had participated in a Dough for Joe bike run and decided we could do our own event to help kids.”

“There are a lot of people who help behind the scenes,” said Kemper, including Tuff Luck Fun Run crewmembers Jerry and Dawn Lembcke of Morris. “We’d like to thank all of our sponsors and sponsored stops for coming on board to make this event possible.” Each sponsor has donated a minimum of $100. In addition, sponsors have donated equipment and other gifts for the kids.

Blume imagines that, one day, the goal of the Fun Run will be, “these families can leave their house for one day and not spend one penny of their own money” for a day of fun.

“It’s a great thing that [the bikers] decided to do, seeking out people who can actually benefit and use the help,” said Jen. “We’re humbled that they would think of us. We’re also excited to help others who might need it, and hope to be involved in this effort in the future.”

Jaxon, Hayden and Carter are all excited to participate in the Tuff Luck Fun Run. “The bike run is going to be fun,” said Carter, who recently rode along on his dad’s bike. Jen, Joe and Carter all plan to join the fun.

The Knick family will meet up with everyone at the end point in Herman, where the boys will be introduced.

“We’d like to thank the Tuff Luck Fun Run crew for thinking of us, and bringing fun and encouragement to our family,” said Andrea on behalf of the Knick family.

Last year’s event drew about 40 bikers. In addition to bikes, those with cars, trucks, limos and buses are welcome to participate. Participants can choose to start at any one of the sponsored stops. The presentation to the Fults and Knick families will begin between 5 and 6 p.m. in Herman, followed by entertainment.

For more information contact Tom Blume at 320-287-0983, Todd Kemper at 701-306-7183 or visit www.facebook.com/toughluckfunrun to view an event poster and more details. Donations may also be mailed to First National Bank of Herman, PO Box 189, Herman MN. Make checks payable to Tuff Luck Fun Run.

I wondered aloud why the bikers had chosen these three young people in particular as the beneficiaries of this year’s Fun Run.

“We did some research about kids in the area, and were contacted by people who had suggestions,” said Kemper.

“We are super grateful that they chose us,” said Andrea. “It is great that they are not only helping kids who have tough lives, but also bringing awareness to the different diseases and illnesses that are out there.”

Then I asked Carter why he thinks he was chosen.

“I’m just that awesome,” he smiled. Yes. Hayden and Jaxon, too. Yes, they all are.

Judy Riley is a freelance writer. This article was originally written for the Morris Sun Tribune.

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