Sunday, April 19, 2009
By SHAIYLA HAKEEM
Local man diagnosed with rare inherited genetic disorder
James E. Howard has survived much longer than what doctors had estimated.
YOUNGSTOWN — Life-altering events are inevitable. Reactions to these circumstances can either destroy or rebuild a life.
Those reactions can sometimes mean having to choose whether to sink or swim in the oceans of illness, confusion and despair.
When faced with that decision, James E. Howard Jr. chose to swim.
A native of Warren, Howard graduated from Warren Western Reserve High School in 1982. At the young age of 19, he says he was called to preach the word of God.
This was one of those life-altering events for Howard, who wanted to do nothing but live a life centered on what was morally right.
“When I first got saved, I told the Lord, ‘No matter what happens in my life, I will always serve you,’” explained Howard. “I was really committed to living and doing things right.”
At that time, Howard had the opportunity to experience a number of different jobs, including working as the first black male prevention specialist for Trumbull County, as an assistant chaplain at the Trumbull County Correctional Ward and as a chaplain at Corrections Corporation of America.
Then, in 1985, Howard started to notice changes in his normal day-to-day activities. He would periodically feel off-balanced, and occasionally his legs would completely give out, causing him to fall.
“I knew something was wrong, but I kept putting it off … I didn’t want to know,” said Howard.
It wasn’t until four years later when he decided to seek medical attention about his progressing condition that he was diagnosed with Becker Muscular Dystrophy. BMD is a rare inherited genetic disorder that affects muscles in the legs and pelvis. It is estimated that only three to six out of every 100,000 males will inherit the gene, according to information provided by MedlinePlus.
Rough road ahead
This shocking news was just one of the many obstacles that Howard would have to face.
Plagued by loss of appetite, fatigue and unbearable chest pain, in 2001 Howard sought medical attention about the new physical ailments. The news received from his physician was earth-shattering. Howard suffered from an enlarged heart as a result of his BMD, adding aggravation to the existing condition.
As time went on, his condition worsened. By 2003, a trip to the emergency room revealed that less than 10 percent of his heart was functioning. He was also suffering from congestive heart failure.
“The doctor said he didn’t see how I could have made it through the night,” said Howard.
A once-healthy, 180-pound man was now a frail 115 pounds. His kidneys and liver were congested, and his body was swollen due to fluid retention.
Grave prognosis
Suffering from a chronic illness and a terminal heart condition, Howard’s body was shutting down. He was told that he had only a 5 percent chance of living another three to six months.
With this tragic news, he was released to the care of Hospice. Friends and family prepared for the worst.
“To be admitted to Hospice care, a doctor has to give a referral and the condition must be deemed terminal,” explained Social Work Supervisor Paula Durkin, Hospice of the Valley. “On average, 50 percent of patients admitted expire within the first 14 days of care.”
Howard experienced everything that a terminal patient could experience. His breathing was slow and shallow, vital organs were shutting down and he remained in a deep sleep, waking only periodically.
Doctors and medical examinations indicated that Howard was living out the last months of his life. He was tired and ready to leave this world.
Awakening
But then something remarkable happened.
“I remember waking up to the smell of flowers. I sat straight up in the bed without any hesitation, got in my wheelchair … and my mother found me in the family room watching TV. They were just amazed,” explained Howard. “From that point on, the Lord slowly brought me back.”
Howard urges us to analyze his life and realize that miracles are possible. He says that as long as there is breath in your body, there is hope, even in a terminal situation. The odds were not in his favor, yet he is still alive to share his story.
“Albert Einstein said this about life. ‘Life can be lived one of two ways. One is as though nothing is a miracle, and the other is as though everything is a miracle.’ I can say today that every day I live is a miracle. I’m living in the miraculous!” said Howard.
To date, Howard has survived more than 90 months longer than what doctors had estimated. He has been happily married to Kenya Roberts-Howard for three years and is the father of two children.
He is currently employed part time at InfoCision, working in the Christian call center. He occasionally volunteers at correctional institutions to offer advice, encouragement and ministry to inmates.
There’s no need for a chauffeur, because Howard drives himself around in a van customized to fit his needs.
“I can honestly say that I am truly living the best years of my life,” said Howard. “I can’t complain.”