Bridge City child battles rare crippling disease
Driving past well manicured lawns with their pristine painted houses gives no one a sense of what burdens their occupants carry. Their windows do not give a glimpse into the tireless efforts, fathomless hopes or secret pains. Such is the case of Mike and Tracy Allison of Bridge City.
The couple has spent years drawing on personal courage and God given strength to care for their youngest daughter, Macy, who currently suffers with an extremely rare and, as yet, unidentified neuromuscular disease. Their years of struggle have been filled with emotional pain, questions and undying hope.
Visualizing hope for Macy has been a moment-by-moment battle at times and certainly isn’t how their story began. Mike recalls the doctor’s statement when he told them the prognosis of their eight month old child.
“Mr. and Mrs. Allison I’m sorry to tell you but Macy has a rare form neuromuscular disease, which has already attacked her optic nerves and they appear to be literally dead. The form of neuromuscular disease she has is very rare in fact we know of only one other who has this same strand. Mr. and Mrs. Allison I’m sorry to be the bearer of this news but you need to prepare yourselves for the things to come.”
The only other one, turned out to be a little boy from Chicago who had survived the condition just three years. Death sentences have a way of bringing out the best and worst in people. Unfortunately, in our modern society filled with angry violent imagery an amount of ambiguity is common.
Macy’s parents, Mike and Tracy, were told Macy’s optic nerve was already completely dead and her hearing would follow the same path. They were also told of her inability to learn, move her legs, hold her head upright, and were assured of her certain deterioration. Mike and Tracy, parents of four other children, decided on a different view of this diagnosis.
“I looked him straight in the eyes, and said, ‘Doctor, I may be nothing more than a sinner,’ at that time in my life I had not even thought about God much less considered myself a Christian, “but you should be ashamed of yourself. God still performs miracles, and one of these days she is going to walk into this office and say, ‘I thought I wasn’t supposed to do this.’” Mike states simply.
Since that time, Macy’s life has been one small miracle after the next, some bigger, some less ground breaking, but eleven years of ups and downs with the Allison’s focusing on the ups. Mike admits the journey out of the doctor’s office that day didn’t start with a complete walk of faith.
“How do you prepare to make each day count?” he said. “How do I live each day in fear that it may be Macy’s last? How do I keep my spirits up? What have I done wrong that my daughter has to be punished for? How will I be able to care for this baby? What about my wife? How is this going to affect my marriage?”
The depth of this story cannot be told here. The anguishing decision to grant test after test; to disallow researchers to name this strain of muscular dystrophy after Macy, calling it Macy’s disease; and decision after painful decision to continue to find out more about what was causing their daughter’s handicap.
“At one point we had a team of five genetics doctors, we have had every kind of specialist there is doing research on her. Our first doctor asked if we were going to want to have more tests done after the initial ones essentially making Macy a guinea pig. Of course we said ‘No’ but with every negative verdict we have kept trying,” Tracy explains. Every parent can relate to the need to know what has caused their child’s pain.
But the journey hasn’t been devoid of mountain tops. Mike says he didn’t pray for the first few years. But as the progression of testing returned no answers, and on the eve of going to Texas Children’s hospital to get Macy declared legally blind to be able to get special aid, he cried and prayed. When told Macy’s optic nerve was definitely dead and she would never see anything, Mike informed doctors Macy had followed a glow stick held in front of her and sometimes squinted in bright light.
One doctor, irritated with what he assumed was just a hopeful parent, demanded Mike take his pen light and run it before Macy’s eyes. As he did, Macy followed the light, throwing all the professionals into a frenzy of disbelief and spawning the family’s first possibility of a miracle. It also led to a case that was literally talked about at every optical conference around the world, since with clinically dead optic nerves, you’re not supposed to see.
Since that day they have looked at everything as a miracle. “We have no answers, she just keeps defying what we have been told,” says Tracy.
She smiles as she discusses her daughter’s ability to mimic and catch onto ‘bad’ words or disgusting sounds she hears.
“If someone laughs at anything, she does she will laugh and continue to do it. Her hearing is very acute since her eye sight is impaired,” Tracy explains, “she has a very extensive vocabulary as well. But she goes to school and has played baseball on a special team using a beeping ball.”
She has defied all the odds. During a recent series of revival meetings at their church, Macy started lifting her legs, another milestone, and more evidence, that Mike’s words to the doctor will someday come to pass. The only medication she is currently on is for seizures, which she hasn’t had in a year.
“There is no insurance of course, and her anti-seizure medication (used to stop an ongoing seizure) is $1500.00 for a single injection,” Tracy clarifies.
There are other issues they have to work out constantly but their passion for tirelessly caring for Macy isn’t their only passion. As a family they also have become involved in missions. They are currently heading up a trip to a Guatemalan orphanage. “We clean building, getting them wired for electricity. Build homes for widows that were living in stick houses. The children are rescued from living in the city landfills, no shoes, their feet cut up.” The trip is scheduled for July and fund raising is already a priority. “We love the children. We love to see them and get to touch them and their lives. We could just give money, but we want to take the money there and do it ourselves. Anyone can send money.” Tracy says with absolute resolve.
Bringing hope where there has been none seems to be typical of this couple. Finding hope where there was none to be found their mantra, believing in Macy’s coming miracle. They are standing, with many who are standing with them, through faith, prayers and hope.