I am thankful

Families share stories of struggle and gratitude

WRITTEN BY SARA GARRISON

Thanksgiving is a time to honor what we are most thankful for. This year, the Pierce family and Mark Chamberlin share their stories of struggle and why they are especially thankful this Thanksgiving.

Grant Pierce

In 2005, Grant Pierce was born with a tiny varicose-looking vein on his left hip. His parents, Kary and Ryan, were living in Colorado at the time and their doctor referred the couple to a dermatologist. This dermatologist diagnosed Grant as having a hemangioma.

“The doctor said the hemangioma could get bigger when he got older,” says Kary. “At four months, we noticed things weren’t as the doctor had said. Veins started appearing from his toes to below his kidney on that side of his body, which didn’t seem right.”

Kary’s uncle works at Massachusetts General Hospital in Boston. This uncle showed a picture of Grant’s leg to a doctor at Boston Children’s. The doctor encouraged Kary and Ryan to take their son to Boston where at nine months old he was diagnosed with Bockenheimer’s Syndrome.

“Bockenheimer’s Syndrome is a vascular birth defect that causes muscular and orthopedic complications,” says Kary. “One quarter of Grant’s body is affected including his leg. After he was diagnosed, he was able to participate in sports, even though his leg was weaker than the unaffected leg.”

As a young child Grant loved playing sports including football, baseball and soccer. In 2012, at age 7, he was playing soccer when he fell and fractured his femur, causing him to be transported via life flight from Jabara Airport in Wichita to Children’s Mercy Hospital in Kansas City.

“Grant sustained a compound fracture, but luckily the bone did not pierce the skin,” explains Kary. “His leg was eight inches shorter than it was supposed to be. This, compounded with his birth defect, caused tons of issues for Grant.” Over the last five years, Grant has had 18 surgeries on his leg, four of which took place in Boston and the other 14 surgeries were at Children’s Mercy in Kansas City. Grant has also participated in physical therapy locally for the past five years.

As a seventh-grade student, Grant can walk short distances in the classroom using a crutch or a cane; however, he requires a wheelchair to walk long distances and to get around. After the accident Kary witnessed her son struggling with depression. His three brothers Evan, Greyson and Brecken were able to play sports, but Grant had to sit out due to his physical disability. Then, four years ago, Kary discovered a track team for kids with physical disabilities.

“Through this experience we are so thankful for all of the people that we have met on this journey. We feel so grateful for our son.” — Kary Pierce, Grant’s mother

Two years ago Grant started competing in national competitions, traveling to Los Angeles, Oklahoma City and St. Louis, participating in the shot put, javelin and discus events. He also uses a racing wheelchair for track events.

“The first national competition Grant participated in, he broke the national record for kids under 14 in shot put. Now he holds the national record in shot put, javelin and discus for his age division,” says Kary. “However, after the track session — which ran from spring through midsummer — Grant was still getting depressed. His three other brothers are doing year-round sports and Grant felt like he was missing something.”

Kary thought to herself that there had to be a sport for individuals with physical disabilities to participate in during the fall and winter months. She couldn’t find anything so in October 2016, Kary Pierce and Leann Funk co-founded the Wichita Adaptive Sports Program that provides fitness and athletics to youth with physical disabilities.

Through this organization, Kary and Leann started and coached a youth basketball team last winter. The team is still thriving and is comprised of boys and girls ages 7 to 14 from across the area. “There is an extreme need for youth programs for children with physical disabilities,” says Kary. “In the last six months we have developed local teams for basketball, tennis, and track and field, offering kids with physical disabilities year-round sports opportunities.”

The Wichita Adaptive Sports Program is continually growing. In October, the organization orchestrated a sports camp, called Ready, Set, Adapt for children with physical disabilities. “Being able to play basketball and sports year round means a lot to me,” says 12-year-old, Grant Pierce. “My mom has opened lots of gateways for me to participate and play sports.”

“I am so proud of Grant. Sometimes he gets down and sometimes he says he wishes he was normal, but I tell him, ‘You are not normal because you are extraordinary.’ He has done more at 12 years old than I have in my entire life,” says Kary. “He is changing the world.”

This spring, Grant will try out for his middle school track team and he has dreams of attending the Bio-Med program at North High School and attending the Massachusetts Institute of Technology one day. “When I grow up I want to be a prosthetics engineer and design prosthetics for amputees,” he says.

Grant has such a bright future. He has overcome adversity and continues to work hard to achieve his dreams.

This Thanksgiving Grant says he has so much to be thankful for. He explains, “I am thankful for my parents that are able to provide me the treatments for my leg, and mom for starting this youth sports program, and my dad for supplying my family with food and the things we need. I am grateful for all the new friends that I am meeting while playing sports. They know what it is like to be different. It reminds me that I am not alone.”

“We are so proud of Grant. He makes straight A’s and has such an incredible drive,” says Kary. “Through this experience we are so thankful for all of the people that we have met on this journey. I am so fortunate to still have my son in my life. We feel so grateful for our son.”

For more information about the Wichita Adaptive Sports Program, find them on Facebook.

Mark Chamberlin

One Saturday in January 2017, Mark Chamberlin was enjoying a golf outing with his friends. Each week, the group of friends golf and walk the fairways of the course. However, this specific Saturday outing was different.

“I was playing golf and I noticed a little shortness of breath,” Chamberlin explains. “I went slow and kept up, but I thought, maybe I wasn’t in as good of shape as I had been before.”

A few weeks later, Mark noticed the walk from the parking lot to his office was challenging.

“I knew something was amiss here. I monitored how I was feeling, but my behavior had changed, I would go home and take a nap instead of going to the gym or working in the yard,” says Chamberlin. “You start rationalizing things. I wasn’t feeling good and I actually took a sick day. In my 13 years of working as director of marketing and communications at Armstrong Chamberlin, I have only taken one or two sick days. I ended up sleeping the entire day and now looking back, I recognize my arteries were closing down.”

The final red flag for Mark occurred one evening while he was talking with his friend and client, Susan Peters, on the phone about their project, "Susan’s Kids."

“Susan started quizzing me about how I was feeling recently and at one point she said, ‘I am going to tell you something and I want you to listen to me. Mark, you are slurring your words,’” says Chamberlin. “That was a catalyst for me to tell my wife Barbara that we needed to schedule a doctor’s appointment.”

“I appreciate every day more. You reach a certain point in your life where you want to appreciate those who are close and find joy in every day.” — Mark Chamberlin

On March 13, Mark participated in a stress test with his physician, Dr. Michael Ludlow. Mark struggled with the test and he was referred to the Kansas Heart Hospital for a heart catheterization procedure.

“During the heart cath, doctors discovered that I was not a candidate for stents and I needed to have a coronary artery bypass graft,” Chamberlin explains.

On March 16, at 67 years old, Mark had triple bypass surgery. After returning home and healing, Mark participated in 12 weeks of cardiac rehab at Wesley Medical Center.

“I am so grateful that I did not have an incident. I had some serious blockage, but I feel fortunate that I did something soon enough,” says Chamberlin. “The surgery is very demanding and painful, but I had such incredible help along the way.”

Now more than six months after his surgery, Mark feels good and his life is as normal as it can be. Mark encourages individuals to pay attention to the warning signs as well as genetics. Mark’s family history of heart disease was an important sign for him: His mother had a triple bypass at age 69 and his four uncles on his mother’s side died of heart attacks in their 50s.

“With my family history of heart disease, I was not surprised that I would need surgery. It is pretty hard to outrun your heredity,” says Chamberlin. “Men tend to deny they are having health issues. They avoid going to the doctor and write off their symptoms and I did a little of that. When I started feeling bad, I started paying attention. Any step in the direction of denial is a mistake. It is important to listen to your body and there is no harm in having your symptoms checked.”

This experience has made Mark extremely thankful for his friends and family.

“Enduring medical challenges, makes a person realize how special life is. I am extremely thankful for my wife, Barbara,” says Chamberlin. “She has always been a compassionate and caring person who will sacrifice everything. Her face was the first I saw when I awoke from surgery. I was so thankful to be able to look into her eyes again. She soldiered on and was so supportive every step of the way. I am also thankful for the friends who were there to support me. I was flooded with cards, gifts, flowers and Facebook messages. It is so amazing and uplifting to see who would take time out of their day to be there with me in the hospital. What matters in life are the friends and the family who are there for you, and that gives you a feeling of great comfort in times of stress.”

“I appreciate every day more,” says Chamberlin. “You reach a certain point in your life where you want to appreciate those who are close and find joy in every day.”

 
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