Fundraiser to help Craig boy with Duchenne muscular dystrophy | CraigDailyPress.com

Fundraiser to help Craig boy with Duchenne muscular dystrophy

Family hopes to purchase all-terrain chair to provide greater independence

— Duchenne Muscular Dystrophy is slowly robbing one Craig boy of his mobility, but with support from the community he hopes to raise funds to purchase a new, all-terrain, Action Trackstander chair.

"Climbing stairs, running, riding bikes or just playing with other kids can be very challenging for me," said 11-year-old Jeremiah Price, who prefers to be called J.P. "As my mobility continues to decrease I spend more time in my wheelchair."

The Action Trackstander is a new type of chair that gives individuals a degree of independence not offered by traditional wheelchairs.

"For those individuals in a traditional wheelchair their life ends at the sidewalk at the end of the driveway," said Alan Macht, director of sales and marketing for maker Action Manufacturing. "As their families go off to enjoy the wilderness those in a traditional wheelchair are unable to join them."

At age 3, Price wasn't meeting normal milestones. After testing at Children's Hospital in Denver the family learned that he has Duchenne Muscular Dystrophy, a genetic disorder characterized by progressive muscle degeneration and weakness.

Until recently, boys with Duchenne Muscular Dystrophy did not survive much beyond their teen years, however life expectancy is increasing and many young adults now attend college, have careers, get married and have children, according to mda.org.

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Parents Krystal and Yancy Price who have two other children — Trystan, age 10 and Joslyn, 9 — work hard to provide J.P. opportunities enjoyed by other kids.

They learned about the Action Trackstander during summer camp.

"The wheelchair is an all terrain — snow, sand, rocks — to get him out of his comfort zone and remind him that he's bigger than his disability," Krystal said.

However the super chair also comes with a super price tag of $16,000, not currently covered by insurance.

How to Help

Just Craftin’ Around

Framed sign painted with the word "family"

When: 10 a.m. to 8 p.m. Jan. 28

Where: 2005 West Victory Way, Craig

Cost: $30 to make it yourself or $40 to have one made

How: Sign up or place an order by visiting https://http://www.facebook.com/events/1817603548505982/

Or call: 970-620-4118

— For more information, visit gofundme.com/jpprice.

The family has saved a few thousand dollars, but started a GoFundMe page to help raise more money.

When Cathy Updike, mother of a special needs child, learned about J.P.'s story, she offered to hold a crafting class at her business, Just Craftin’ Around and will donate almost all the proceeds to J.P.'s fund.

"I can't think of something more wonderful than helping a little boy get a chair that will help him get outside and be more like a regular kid," Updike said. "You don't realize how much a family sacrifices. Vacation while at the hospital, always making appointments, there's so much extra, there isn't money for extra things."

People who take Updike's class will make a framed, wooden, 12 by 28 inch, sign with the word "family" painted on it.

MJK Sales and Feed Ace Hardware has provided the wood at a discount.

"Everything except the price of the wood will go towards his tracks," Updike said.

About five volunteers are helping prepare the project, which takes about two hours to make. For those who are unable to attend the class, Updike is offering finished signs at a slightly higher price.

"It's great that people are able to make a donation, but get something in return to remind you that you made that donation and can feel good about it," Krystal said. "It's a great community we live in. We are very thankful."

If he reaches his goal, to buy the Action Trackstand, J.P. plans to use it to drive around and "say thank you a lot.”

"I also want to go in the mud and go deer hunting with my dad," he added.

Contact Sasha Nelson at 970-875-1794 or snelson@CraigDailyPress.com or follow her on Twitter @CDP_Education.

How to Help

Just Craftin’ Around

Framed sign painted with the word “family”

When: 10 a.m. to 8 p.m. Jan. 28

Where: 2005 West Victory Way, Craig

Cost: $30 to make it yourself or $40 to have one made

How: Sign up or place an order by visiting https://http://www.facebook.com/events/1817603548505982/

Or call: 970-620-4118

— For more information, visit gofundme.com/jpprice.