A Bright Future: Ian and Micah’s Story

Even though I’ve been hanging around CHOC Children’s for a long time now, I am continually surprised by the courage, tenacity and strength of the patients I meet. It’s especially gratifying to meet people who have reached special milestones and enjoy bright futures thanks to their treatment at CHOC.

Today, I want to introduce you to two such patients, Ian and Micah Rogers, who recently overcame some big obstacles to earn a huge accomplishment.

In front of a standing-room only crowd, Ian and Micah Rogers recently kicked, punched and sparred their way toward a black belt in karate.

Attaining a black belt would be a proud achievement for anybody. But for the two brothers, the accomplishment is even more significant given their rare form of muscular dystrophy, diagnosed by CHOC Children’s metabolic disorders specialists about eight years ago.

“People might think that because I have muscular dystrophy, I cannot do anything,” Micah, 10, wrote in an essay. “But I proved them wrong. … Earning my black belt gives me hope that I can be tougher and could accomplish lots of stuff even though it’s harder for my body.”

Micah was first diagnosed after a series of blood tests and muscle biopsies. By his 12-month doctor’s appointment, his doctor suspected something was wrong and he was ultimately diagnosed with muscular dystrophy.

Micah’s mother, Akemi, knew his older brother, Ian, had the same condition. As a baby, Ian had difficulty holding his head up while on his stomach. He was quickly passed by his friends while going up stairs, and he got tired after passing just a few houses on his tricycle. Following Micah’s diagnosis, Ian also tested positive.

Further genetic testing by Dr. Jose Abdenur, division chief of metabolic disorders at CHOC, refined the boys’ diagnosis to a type of Fukuyama congenital muscular dystrophy. Fukuyama CMD is a progressive degenerative disease that affects the brain, eyes and muscles. Because the Rogers boys were the first to be discovered with this specific condition, they have an unknown prognosis.

Rogers_CHOC_2
The Rogers brothers with their sensei.

“In the beginning, I was very afraid,” Akemi says. “I wasn’t sure if they were going to walk next month, or talk next year. I felt like life was so fragile.”

Faith, time and the care of CHOC specialists gave the family resilience and hope. And participating in karate has helped greatly: In 2010, Micah and Ian began training at Karate for All, an occupational therapy karate program designed for children and adults with special needs.

“It keeps them limber because they do stretching,” Akemi says. “It gives them confidence and agility.”

Writes Micah, “(Karate) gave me strong legs. It made me more focused. It gave me better balance. It taught me how to relax.”

While physically challenging for the boys, the black belt test was equally challenging emotionally for Akemi and husband, Randy, and the many friends and family who attended the milestone event.

“Everyone knew this was not a normal black belt test,” Akemi says. “They’re walking miracles. They have normal vision and intelligence, and are breaking boards – though that could all change.”

“Today, there may be no cure for muscular dystrophy, but muscular dystrophy is curing us of wasted worry and wasted pursuits, and teaching us to savor our time with our kids. We’re so proud of them.”

But for now, the boys continue to persevere, seeing a variety of CHOC specialists throughout the year and are great big brothers. And they plan to take their responsibilities as black belts very seriously.

“Your duty as a black belt is to love everyone around you,” Ian, 12, wrote in his essay. “Then and only then, will you be a black belt.”

 

A Bright Future: Bill’s Story

After 50 years of care, CHOC Children’s has no shortage of inspiring people who attribute their bright futures to the hospital. I just met another: Bill Wells, who began treatment for leukemia in 1970 and is now a hospital chaplain.

Bill WellsEach and every day in his work as a hospital chaplain in Orange County, Bill Wells draws on his experience as a patient at CHOC Children’s decades ago.

“What is most important to me in this story is the memory that I have of CHOC, the people, physicians and staff,” he says. “It was always about compassion and caring and being available to children on a level that meets their needs. That has had a huge influence on me and my work as a hospital chaplain.”

Bill, now 50, began treatment for acute lymphoblastic leukemia (ALL) at CHOC in 1970 at the age of 7. A Tustin native, Bill recalls experiencing bad pain in his legs, as well as frequent fevers and colds.

Though his pain was initially dismissed by a physician as growing pains and the fevers as the flu, a second opinion led to fast admission and diagnosis at CHOC. There, Bill briefly went on the standard treatment, but then was selected for a new experimental protocol, he says.

At the time, children with ALL had a life expectancy of only two or three years, and the probability of living five or more years beyond diagnosis was zero, Bill recalled.

One of Bill’s strongest memories of his time at CHOC was listening to a nurse sing to him.

“I had the most awesome nurses,” he says. “One nurse used to sing all the time. What that said to me was that she cared a ton about me.”

After five years of chemotherapy and hospitalizations, Bill’s parents stopped therapy at his physician’s recommendation. He then began regular checkups, bone marrow aspirations, spinal taps and blood work that tapered off until he was about 19 years old.

The cancer never returned, but Bill’s experience at CHOC left a lasting impression. Possibly setting the stage for his career, Bill began serving as a mentor and friend to other young people undergoing cancer treatment at CHOC shortly after he ended therapy.

In 2002, Bill reflected on that volunteer experience when he found himself taking stock of his life’s accomplishments. Though he was enjoying a career as a successful musician, Bill wanted more meaning to his life and considered pursuing a career as a hospital chaplain.

“I kept asking myself, ‘If I died tomorrow, would I be satisfied with my life?’” he says. “My answer was no.”

Bill went on to earn two graduate degrees, complete chaplain training programs at three hospitals, and become ordained as an Episcopal priest.

When Bill began a hospital internship at UCLA, he requested to serve in pediatrics and pediatric oncology. His supervisor asked how his own experience with cancer and hospitalization would affect his work. Bill didn’t think it would do so much at all – but he quickly realized he was wrong.

“I have learned a great deal since that first, incredibly naïve day,” says Bill, who now serves as a chaplain for two Orange County hospitals. “My life, your life, our stories, have gifted us with experiences that have taught us compassion and have set us on a path of using our hands, our minds and our hearts to help others.”

A Bright Future: Bryan’s Story

I count myself as one lucky bear for being a part of the CHOC Children’s family. Ever since the doctors and nurses patched me up after my unfortunate fall, I have never wanted to be too far from this wonderful facility and the caring staff. And, guess what?  I am not alone. During my 50-week gratitude tour, I have met so many people who have bright future’s thanks to CHOC. Bryan is just one of them. Read his story to learn more.

When he was 10 years old, Bryan Mundia spent the majority of his time with physicians and nurses.Bryan Mundia

He suffered from a severe case of reflux; one that threatened his kidneys. Following a two-week stay for observation at CHOC Children’s Hospital, he underwent surgery to repair the valve between his ureter and bladder.

While most young boys would choose to put the hospital experience quickly behind them to focus on other pastimes, Bryan couldn’t let go. He had a strong desire to give back to CHOC.

Some 20 years later, Bryan is doing just that.

“My experience with CHOC changed my perspective on hospitals,” recalls Bryan. “I remember how friendly everyone was, from the doctors and nurses to the candy stripers. I remember playing video games – definitely not something I had expected prior to being admitted.”

Bryan speaks of his experience at CHOC with pride.  It was a life-changing event for me, he says.

As soon as he was able, Bryan became a hospital volunteer. His wife, Katie, and their dog, Molly, who is a certified pet therapy dog, are also volunteers, making it a family affair. It didn’t take long for Bryan to realize he wanted to do something even more.  He made the decision to change careers, from land surveyor to the media programs coordinator for Seacrest Studios at CHOC.

In his new role, Bryan manages the multi-media broadcast center, which provides patients with the unique opportunity to engage in activities related to TV, radio and new media.  He, along with his energetic team of interns and volunteers, provides a positive experience for patients and their siblings – one they likely didn’t expect they’d get when being admitted to the hospital.  Bryan can certainly relate to that!

“I know, from personal experience, the impact this hospital has on children and their families.  I am so proud to be a part of CHOC and try to give back in this way,” says Bryan.

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  • A Bright Future: Ian and Micah’s Story
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