An Interview With Danielle Gandee (Braden's mother)
What is cerebral palsy?
An injury to the brain that happens before, during or shortly after birth that results in muscle tightness, weakness, and/or lack of coordination.
How old is Braden?
9 years old
When was Braden diagnosed?
We were told at birth he would most likely have Cerebral Palsy but the official diagnosis came at his 1 year check up
How was a diagnosis made?
He had many tests in the first few weeks of life including ultrasounds and MRI that showed the actual damage to his brain
What symptoms did/does Braden have? Braden has spastic Cerebral Palsy, involuntary tightness in his legs and right arm and weakness in his torso
What treatment has Braden received? Braden receives physical and occupational therapy 7 times a week, has participated in hippotherapy, aquatic therapy, constraint therapy, conductive education, medicine, botox, bracing and casting and last June he under went a major spinal surgery known as SDR.
What causes cerebral palsy?
Cerebral Palsy can be caused by a stroke, a brain bleed, head trauma, lack of oxygen or many other injuries to the brain
Is this condition heredity?
No, it is an injury to the brain
Is medication prescribed, if so what?
What support was/is available to Braden's family?
We are our support along with Braden's medical team that includes therapists and doctors and his school.
Does Braden attend a regular school or does he receive special education?
He is in a typical classroom.
What does Braden enjoy doing in his spare time?
Braden loves wrestling!
He loves watching Hunter and Hunter's team which is University of Michigan wrestling, Team USA Olympic wrestling and WWE.
He also enjoys participating in wrestling himself.
He likes robots, video games, lego's swimming, horseback riding, vacations and hanging out with his family and friends.
What type of personality has Branden?
He is very social, fun, silly, talkative and energetic.
He is smart, determined and kind.
Hunter is Branden's elder brother, how old is he?
Hunter is 16
Hunter carried Braden on his back, how far was the journey?
In June of 2014 the walk was 40 miles, in June of 2015 the walk was 57 miles and this final walk April 20-25, 2016 was 111 miles.
Where was the start and where was the finish?
In June of 2014 the walk was from Bedford Junior High School to the University of Michigan's Bahna Wrestling Centre.
In June of 2015 the walk was from Braden's school Douglas Road Elementary School to the University of Michigan's Pediatric Rehabilitation Centre and this final walk April 20-25, 2016 was from Bedford High School to our State's Capital, Lansing, MI.
What is The Cerebral Palsy Swagger?
Hunter is the oldest of four children.
He is 16 his sister Kerragan is 15, brother Braden is 9, and the youngest brother Kellen is 8 yrs old.
Braden was born early at 32 weeks and complications resulted in him having Cerebral Palsy.
We describe Cerebral Palsy as an injury to the brain that makes the muscles squeeze tight, be too loose or uncoordinated.
Being the oldest and very excited to have a baby brother, Hunter was always involved with Braden.
He would read to him and play with him and he attended therapy with Braden when he could.
With 6 years between them Hunter and Braden grew at the same pace, and it wasn’t long before Hunter was carrying Braden on his back, slowly becoming Braden's legs.
Watching Braden and seeing some of the difficulties he was having, Hunter decided he wanted to try to make a difference, not only for Braden but everyone who has Cerebral Palsy, and education is the starting point of all change.
Hunter is very active in school and sports. He maintains all A's, is president of his Student Council and was the president of his National Junior Honor Society, plays football and earned his Varsity letter in Wrestling.
His teachers, classmates and teammates see him as a leader both in the classroom and out.
He has many friends and has influence on an even bigger number of people.
He decided to start the education for change right there, with his friends and classmates.
March 25, 2014, Cerebral Palsy Awareness Day, Hunter and his fellow Student Council members sold green rubber wrist bands that said “Cerebral Palsy Awareness" for one dollar at school during lunch periods.
They displayed posters with facts about Cerebral Palsy and even brought in Braden for a brief Q&A session.
They raised $350.00 which was donated to the University of Michigan’s Cerebral Palsy Research Consortium.
At that time Detroit's Channel 4 News, the University of Michigan, and Mott Children’s Hospital ran newspaper articles and television stories about his campaign.
But Hunter wasn’t done yet!
He wanted to do more, teach more people, find a way to inform the entire community.
After all, this community is Braden's home.
The more they know about Braden and Cerebral Palsy the less questions, stares and awkwardness there will be and the more ideas for change there could be.
Hunter created THE CEREBRAL PALSY SWAGGER!
The Cerebral Palsy Swagger Walk of 2014 was hoped to be a 40 mile walk over 2 days in which Hunter would piggyback Braden from the wrestling room at Bedford Junior High School to Bahna Wrestling Centre at the University of Michigan.
Wrestling room to wrestling room because wrestling was physically the hardest thing Hunter had experienced just as mobility is Braden's.
School to school because educating was the primary focus.
Hunter carrying Braden because it demonstrates love, support, and teamwork all of which are needed in order to make the changes Hunter was hoping for.
Two brothers, accompanied by their family and friends, walking through the streets introducing people to Cerebral Palsy.
The goal was to get the attention of the up and coming leaders, doctors, engineers and entrepreneurs and show them a face of Cerebral Palsy and the need for innovative ideas in mobility assisting devices and medical practices.
An idea was dreamed, a plan created, a route drafted, social media pages opened, emails sent, letters mailed, flyers hung and when the media caught on the story went worldwide.
They began doing interviews on a daily basis promoting the walk, explaining what Cerebral Palsy is, and showcasing Braden's daily struggles (ex. Braden's walker manoeuvring through grass, mulch, gravel, sand, snow etc.)
The boys began training and testing different carriers.
A huge "Send Off" was organized by the Bedford wrestling program and Bedford Junior High and the "Finish Line Party" was sponsored by the University of Michigan's Wrestling Programme.
Saturday June 7, 2014 - The walk started on a bright and sunny summer morning. The pace was good, the spirits were high, the boys were entertaining each other and everyone was having a blast. Hundreds of people came out to show their support.
Some people made signs and cheered as the boys passed; some opened their yards and homes to the boys during rest stops; some handed out water, fruit and snacks; some walked a mile with the boys; some walked many miles.
Hunter was fortunate enough to have 5 friends walk the entire 40 miles with him that year-Kyle, Brady, Darric, and Cole as well as Chris Heald a Michigan wrestler who he had never met until that morning. Mile after mile they pushed on but by evening the exhaustion began setting in as well as soreness and blistering.
A prayer with a friend, well wishes from supporters and the encouraging cheers from Milan provided the boys the strength they needed to stagger into town that night at 10pm.
Sunday June 8, 2014 - Chafing, blisters and muscle fatigue woke the boys on that cold and rainy morning.
They suited up, friends and umbrellas in hand, and set out to push through the 2nd half of the walk.
A few miles in, Braden was in a great deal of pain.
No matter which carrier Hunter used Braden's legs had constant friction with Hunter's back and with the damp conditions Braden had blistered and the blisters had opened to raw skin, to avoid that position totally, Hunter cradled Braden in his arms and carried him that way, arms burning from the weight, until the next rest stop.
About to give up on the idea of finishing piggyback style, Hunter asked Braden if he wanted to finish the last 10 miles in a stroller; Braden bravely declined.
Again, Hunter called on his friend, Levi, to pray with them.
This time it was Sunday morning and Levi was in church.
The whole church prayed.
We contacted Braden's therapist, who was also in church and her church prayed as well.
Within minutes 2 therapists, a rehab engineer and a nurse all showed up with ideas and supplies.
Adjustments were combining the carriers and hospital grade bandages were applied to Braden's wounds.
The sun started shining, smiles returned and the boys were ready to complete the walk.
And they did just that with Braden on Hunter's back every step of the 40 miles.
The walk was not for money, it was purely an awareness project, but many people who could not join in the walk still wanted to be a part of it and insisted on doing something.
During the walk $15,000 was collected and donated to the University of Michigan's Cerebral Palsy Research Consortium.
The University used a portion of that money to host a medical conference on updated information and research regarding Cerebral Palsy on March 25, 2015.
The boys were special guests at the conference.
After the Cerebral Palsy Swagger was featured on NBC Nightly News even more people reached out and wanted to give but now they wanted to give directly to Braden.
Not comfortable with accepting money, they thought long and hard and decided the best way for these people to be able to give was to create a new project, an inclusive playground for Braden's school. At the time Braden's school, Douglas Road Elem, only had one handicap accessible swing and the entire playground was enclosed in mulch so Braden spent most of his recess off to the side watching his friends play.
They teamed up with the school and PTA (to be 501c3 compliant) and began the process of choosing a playground company and then a design.
The playground was named The C.P. Swagger Shipyard, with a pirate's ship as it's centre.
They created a dream plan for the playground with an estimated cost of $350,000 and then phased it into smaller projects.
To date they have raised almost $200,000 of the $350,000.
The first walk was such a success that Hunter decided to do a second Cerebral Palsy Swagger Walk only this time it would be farther, by 17 miles, travel through new communities and hopefully educate more people!
Friday June 5, 2015 - This walk left directly from the ground breaking ceremony of the playground.
All 600 of the students from Douglas Road Elementary School walked the first half mile starting things off with an extra kick of energy!
It was a pretty nice day outside of a short early rain and things went smoothly! There was a stop in the town of Ida for dinner and the day ended camping out in tents at Wilderness Campground.
Saturday June 6, 2015 - The boys woke up and started the long day at 8 am.
The first half of the day consisted of walking through Dundee and into Milan for lunch.
Things were going good with great weather and a group of about 20 strong. As the day wore on, things began to get more and more difficult.
Soreness and fatigue really set in the last couple of miles.
Rest and stretching by U of M therapist's was important during rest stops as Hunter’s hamstrings were tightening up very quickly.
Darkness fell with about one mile left to go for the day, and there they reached the most difficult point in the walk.
By the time they reached their destination, a hotel in Ypsilanti, Hunter was so exhausted he actually collapsed to the pavement, Braden still on his back. A few of Hunter’s friends quickly reacted unstrapping Braden and pulling him off, and helping Hunter back to his feet.
A prayer was then said and it was time to recover.
After lots of stretching, a quick dip in the hot tub, and an ice bath, he crashed for the night and started resting up for the final day.
Sunday June 7, 2015 - Hunter woke up the next morning to tight and sore muscles, but with determination to finish the last day.
The last day’s route went through the campus of Eastern Michigan in Ypsilanti, into Ann Arbor, and the through the University of Michigan’s four campuses, the athletic, central, medical, and north campus.
They reached the finish line at the University of Michigan’s Pediatric Rehabilitation Center around four and arrived to cheers and applause from a crowd.
After interviews, pictures, and words with the crowd, Hunter and his family and friends gathered inside to celebrate over lunch.
The second Cerebral Palsy Swagger was covered by Sports Illustrated.
Shortly after the second walk Braden had a big surgery, Selective Dorsal Rhizotomy. The doctors opened four of his vertebrae, exposed the nerves and severed 70% of the ones that over reacted when stimulated.
This was done to eliminate some of the spasticity in his legs in hopes of avoiding bone deformities.
The surgery can also allow for a more typical gait pattern and can increase the possibility of building up the muscles needed to walk independently.
Braden spent two weeks in Mott Children's Hospital and the rest of the summer in intensive therapy.
During this time the boys took a break from all of their projects and concentrated on Braden's recovery.
But as soon as school started up they were back at it.
It was early September when it was decided that the new playground would be installed as a "Community Build" project.
On October 1, 2015 the playground pieces arrived at Braden's school.
Sun up until sundown for the next three weeks volunteers worked to assemble the play structure.
People from all around came and donated whatever they could; food, tools, equipment, their time and their talents. Hunter spent every free second working alongside the volunteers and Braden watched from close by.
One day at a time, one piece at a time, one volunteer at a time the vision became reality.
October 26, 2015 was the Grand Opening and ice cream social.
Sports Illustrated and NBC Nightly News both came back to cover the event. Finally, Braden has the freedom to play with his friends and the boys were able to better their community by adding an inclusive playground for all.
Many other opportunities arose from this walk.
The story ran in the media all over the world including the NBC Nightly News on four separate occasions, Today Show, Fox and Friends, GMA, Ellen's Show online, People, Family Circle, Yahoo, Scholastic News, CBS's Courage in Sports, Sports Illustrated, and the Associated Press.
They were recognized at the National Inclusion Project's Gala, brought out on the field and their story played in front of 100,000 people at a University of Michigan football game, the story was played and they threw out the first pitch at a Detroit Tiger's game, a Toledo Mud Hens game, and a Lansing Lug Nuts game, and WWE shared their story through Twitter and hosted the boys for a VIP night at RAW in Cleveland.
The boys were recognized by their school district and Monroe County, United Cerebral Palsy of Metro Detroit, the National American Legion Auxiliary, Michigan State Representatives Jason Sheppard and Dale Zorn, Michigan Governor Rick Snyder and Lt. Governor Brian Calley.
They have been given numerous awards for our accomplishments.
In May of 2015 Hunter was the Prudential Spirit of Community Michigan High School State Honoree and went on a trip to Washington DC where he met Michigan’s Senators and interacted with student leaders from across the nation. He won the Governor’s Service Award for Youth service, was a finalist for the Governor’s Fitness Award for inspiring story, won the Bill Treasurer Open Door Leaders Award, the Presidential Service Award, the Sports Illustrated High School Athlete of the Month, the Monroe County Academic All Star Award, the Youth Jefferson Award, R.J. Mitte and Shriners Hospital recognition, and the Bedford Now Citizen of the Year Award.
Through these efforts and publicity, they've gotten the attention of engineers and now three different teams are working towards re-designing walkers for improved mobility in all terrain.
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