Battling a rare neurological disorder
By Terry Haywood, Associate Editor, The Paper
GALESBURG-When Wendy McCoy gave birth to her son Brenden 8 years ago, like most mothers she was happy to welcome the addition to a family already consisting of two children, Austin and Brooke. But what Wendy learned 6 years later would eventually to change her life in ways she could never have imagined.
One day in the late 1990's Wendy began to notice something was different with Brenden. Brenden seemed slow to crawl or walk, "But I simply thought that he might be a slow learner and wrote it off as such. Then one day I noticed his eyes moving back and forth, unable to focus almost like someone suffering a brain concussion." So as any concern mother would do, Wendy rushed Brenden to the hospital emergency room.
"Because emergency room physicians are trained to identify signs of abuse, they began to question me about whether or not I, or anyone else, had harmed Brenden," explains Wendy. She is surprisingly calm discussing an obviously difficult topic. But after 8 years of tending to a child who suffers from Oposoclonus Myoclonus Syndrome: a rare neurological disorder characterized by unsteady gait, rhythmic, involuntary motions of the limbs during voluntary movements, brief, shock-like muscle spasms, and irregular, rapid, horizontal and vertical eye movements, Wendy explains the disorder with the proficiency of a physician. "I've taken the time to learn as much as I can about the disease because it's affected my baby's life so drastically," she explains.
But Brenden's attitude has not been daunted in any measurable way, "You have to meet Brenden, he's a real trooper," Wendy says about her 8-year-old son who has experienced more medical difficulties in his life time, than most people 10 times his age, "He attends classes for children with special needs at King School in Ms Mosley's class. He loves going to class and being with other children." Brenden had spent most of his life at home, or in and out of hospital rooms, so having an opportunity to attend school, to be in the mist of other children and just be a normal 8-year-old boy is a feat Brenden cherishes where other children his age might take it for granted.
"There are little things Brenden has never done before that you or I might take for granted, like eating a bowl of cereal with milk. Brenden can't do that because he shakes to badly he can't hold a spoon. Or to ride a bike, Brenden will never ride a bike because of the balance required to do so, and to get him a bike fitted for a child with special needs would cost $500 to $600, and being a single mother providing for three children makes the likelihood of getting him something like that almost impossible," explains Wendy.
But what recently changed Brenden's life was treatment by a physician who has become an authority on Oposoclunus Myoclonus Syndrome who agreed to see Brenden after Wendy's family physician provided her information about work the doctor had done in the field. Her family physician suggested she contact Dr. Michael Pranzatelli, founder of the National Pediatric Myoclonus Center. Pranzatelli was practicing medicine in Washington D.C when Wendy contacted him to inquire about whether he could help Brenden. It goes without saying she was desperate at the time, but to her surprised, Dr. Pranzatelli had agreed to accept a position as staff Neurologist and Professor of Neurology and Pediatrics at the Southern Illinois University School of Medicine, the news of which worked like an infusion of much needed hope and promise for Wendy. And even better yet, Dr. Pranzatelli agreed to see Brenden upon his arrival there.
"I couldn't believe it. It was like a blessing, Dr. Enoch referred us to him [Pranzatelli] and when we spoke with Dr. Pranzatelli it was like a breath of fresh air," recalls Wendy, "We packed up and went to Springfield. Dr. Pranzatelli recognized Brenden's symptoms immediately and began to prescribe a regiment of drugs to fight the tumor." Wendy was referring to the tumor that had grown in Brenden's abdomen that was cause havoc to his central nervous system.
However, Brenden's story doesn't stop here. Four more years of a strict regiment of drugs, therapy and treatment followed. There was a period when Brenden was required to receive 3 injections a day, and a monthly transfusion that though torturous, Brenden accepted unquestionably, according to Wendy.
"He's never known life any differently than having injections and transfusions, so although it's extremely painful for him, and causes him to be sick for a period of time, he takes the whole thing in stride," Wendy forces a smile, but you can tell the smile conceals the stress and strain placed on her, and family, having to cope with Brenden's illness.
"We've had to adjust to Brenden's illness. And that's really where my mother, who lives upstairs and Brenden's brother and sister has been wonderful," Wendy says, referring to 11-year-old Austin and 10-year-old Brooke, Brenden's big brother, sister grandmother, Sue Anderson. "All of our lives have changed because of Brenden's illness, but that's just what we've had to endure; unexpected trips to the hospital, dropping everything and picking up and going, Austin and Brooke have been wonderful in adjusting to the unpredictability surrounding Brenden's care," Wendy explains.
Another occurrence that was totally unexpected, and which has effected the McCoy family's lives in ways they had never dreamed, was the freedom and relief brought into their lives by medical attention delivered to their home by trained professionals-professionals formerly who had been visited in the hospital.
"Cottage Home Options has been great, I really mean it. We used to have to visit the hospital 3 times a day when Brenden was taking injections. That was 7 days a week, and turn around and go right back for transfusions, so I was always leaving work or having to juggle my schedule one way or another," Wendy recalls, "It seemed like we were constantly in hospitals, or having to go to another office for either physical therapy, chemotherapy, speech therapy, we've had to spend a lot of time in offices or hospitals over the years," says Wendy. Brenden has had to learn to walk, talk and do things other children his age have long learned to do," Wendy explains, "And to have the treatment and medicines that are necessary for him to stay home and receive the same quality of care and attention he would in a hospital is truly a miracle."
Cottage Home Options is a local provider of medical equipment and supplies for homes. The locally owned business offers a number of valuable services for patients at home like respiratory therapy and supplies, home nursing and therapy, home IV pharmacy and a line of home medical equipment. Since Cottage Home Options is certified by Medicaid (as well as, Medicare and most local health insurance plans), families like the McCoy's can receive the service. Wendy is a single, working parent, earning close to minimum wage and supporting three children.
"Hospitals do everything they can to make you comfortable, but noting is like having the care brought to the home," Wendy observes, "And Brenden feels different about receiving the treatment at home too. He really doesn't feel like he's sick, because he's not in a hospital."
Wendy is experiencing a sense of normalcy again in her and her family's life since discovering Cottage Home Options. She feels a new sense of security and freedom now that medical care is being brought to her home. For instance, she's recently returned to the workforce, which had constantly been interrupted in the past due to Brenden's illness and special needs. Wendy says the home care allows her to spend more time with Austin and Brooke, attend school functions, and of course, work. But an unexpected consequence of having trained professionals come to the home to deliver the services Brenden most desperately needs to recover from the disease that has so impacted most of his life. Wendy says she now has the time to reflect on the last 8 years, which is something she has found the time to do only recently, since Cottage Home Options has entered her family's life. "It might sound selfish but having the convenience of Brenden's treatment and therapy the nurses and other staff brought here has given me a peace of mind, that I haven't enjoyed for 8 years," Wendy compliments, "they work around our schedule. For instance, if we're on our way out the door, they'll come back or do whatever to accommodate you, and they go about doing their job they're very conscious about making you feel comfortable, and that's important when you have other children who have needs that need attending to also."
Though Wendy's life is far from, or probably never will be, normal, the McCoy family continues to be affected by Brenden's illness and recovery. Wendy says the experience has pulled them closer together as a family, and brought about a new appreciation of the unique qualities Brenden has developed.
"Brenden truly is special. He has such a capacity to love and appreciate other people. He seems to recognize the good in other people, and he empathizes in the suffering of other people. I think I told you, Brenden doesn't realize he is sick. When he comes home from school he often comments about how difficult it is for the other children in his special needs class, not realizing he has special needs too," says Wendy.
Normalcy to the McCoy's is not having to make the constant visits to the
emergency room, or having to watch Brenden tremor lying on his back, eyes
darting back and forth uncontrollably. Wendy says there is hope for Brenden
now, she sees him improving everyday and she credits his continued recovery
to several physicians who cared enough to treat her son and a business that
has allowed the family to take a deep breath, look towards their future and
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