How the URO Urinary Suspensory System (and a Giant Shuttle Named “Sully”) Made All the Difference to the Copp Boys
By Jody Copp, Raising Wheels Foundation and Lawson & Calan’s Dad
My name is Jody Copp and I'm the father of two amazing boys. Both of our boys (Calan 14 and Lawson 11) have a mitochondrial condition caused by a gene mutation of the PNPT1 gene, a condition so rare we are only aware of 20 other cases in the world and there is no known diagnostic name, treatment or cure.
Melissa and Jody Copp are holding hands with their wheeling sons, Calan and Lawson, and smiling for the camera in front of their accessible home.
The condition has caused overall global delays and the boys are unable to stand or walk without the use of assistive devices. Lawson uses a power assisted wheelchair, and Calan now uses a full powerchair as their primary mode of mobility. The boys are the oldest of the known cases, so we've been blazing trails their entire lives.
Copp Family Roller Coaster Backstory: From Fixer Upper to Raising Wheels
Our family was blessed beyond measure when Chip and Joanna Gaines teamed up with Tim Tebow and his Tim Tebow Foundation to remodel a home to be 100% accessible for our boys, and our episode aired on the HGTV show Fixer Upper in January 2018. After the episode aired, Chip asked the viewers to also pay off our mortgage, which was done in 2 hours!
An overwhelmed Copp family with Fixer Upper’s Joanna Gaines is overwhelmed as their new accessible home is revealed.
Because of this life-changing gift, my wife Melissa and I made the very difficult decision for me to resign from my professional career as a purchasing agent for the City of Waco, and stay at home with the boys as their primary caretaker. We also felt it was our duty to pay it forward and help other families in our situation, so we launched the Raising Wheels Foundation, a 501c3 nonprofit in July of 2018. We are fully volunteer run, so our family is now on only my wife's income. We know we have made the best decision for our family, even with the additional financial burdens, especially during the Coronavirus pandemic when our family was quarantined for 2.5 years to keep our boys as safe as possible.
All smiles from the Copp family in their Raising Wheels t-shirts with their service dogs at a park.
Enter Sully, a Titan-sized Shuttle to Accommodate Growing Boys and Their Personal Needs
I provided the background above so you know more about our family and our determination to fight for our boys' needs. Up until March of 2020, and due to COVID-19, we were a very active family. As our boys are getting older and bigger, their equipment is also getting bigger and we were quickly running out of room in our Honda Odyssey minivans.
The boys each have a service dog through Canine Companions for Independence and we had no way of carrying all the equipment, dogs and luggage required to go out of town. Long story short, with the financial support of family and friends, we were able to purchase a 2003 Glaval Titan II shuttle bus in June of 2021! The bus has a wheelchair lift and has GREATLY benefited our family already. The bus is 34' long and we have dubbed him Sully (Monsters, Inc.) because he's a monster, but nice.
The Copy family poses out side their enormous white shuttle bus, affectionately named “Sully.”
We travel from Waco, TX to Houston, TX for their specialist appointments, and to summer camps and other events all across Texas. We try to give our boys every experience we can so they always know anything is possible if you want it bad enough.
Our boys are medically incontinent, so we can't just stop at any bathroom on these long trips to take care of their needs. Previously we had to stop and park behind a building, completely unload our van, take care of their needs in the back of the van, and then reload.
Therefore, we purchased Sully to not only be able to carry their equipment, but to provide room to install what we've coined a Life Assist Table, which is in fact an adult changing table. This table has finally given us freedom as we travel because we can take care of their needs without anyone knowing a thing, preserving their privacy and dignity!
Thanks to Make-A-Wish-Foundation, “Sully” the shuttle bus got a makeover including an image of the Monsters, Inc. character after whom it was named.
Last June, Lawson's wish was granted through Make-A-Wish to havebling Sully upfitted with seats recovered in his favorite color, fun lights, a TV and a video game option to provide the boys entertainment, as well as other additions to assist our family on these long rides to Houston and beyond. Sully means so much to our family and has been such a blessing to us already!
Grateful Dad Loves the Uro Urinary Suspensory System for his Sons
The reason I'm reaching out to Uro Concepts today is because we've learned that with these boys, it takes a village. After reading about Celeste's story and how the Uro Bag came to fruition, I just wanted to say thank you.
I found this product via an email from the Abilities Expo, an event we LOVE due to the new products and accessories we can find for the boys. We have made so many contacts at these events and many have continued to help us on our journey. There aren't many items I just have to try, but this was one of them!
The Copp family is decked out in Raising Wheels t-shirts, caps and wheelchair covers at Abilities Expo.
I believe a member of our medical team, Shannon Hill, has been in contact with Uro Concepts in trying to get this product through Medicaid for Calan. She asked me today if I would fill out the referral form and I did this evening. I know everyone is working hard to make this happen and, again, thank you!
This is such a wonderful product and I absolutely love the story behind the company. Necessity is the mother of all invention, and Celeste's father was lucky to have her care enough to not only help him, but also help others as well.
