Welcome to the International Organization of Glutaric Acidemia (IOGA)
Michael Charles Metil
This is a Pittsburgh story. No, it is not about Steelers, Penguins or Pirates.
It is about a boy named Michael Charles Metil. A boy that transformed many lives including mine.
While visiting grandparents over Christmas holiday in Latrobe, Pa 1993 Michael became sick. He was lethargic, vomiting and had some diarrhea. Thinking it’s just a stomach bug I was grateful to see him finally sleep. Little did we realize how very sick he was. Or the fact that he had an undetected genetic disorder since birth. Michael had been a preemie. 24 weeks to be exact living close to the edge of life. He weighed 2 pounds. Two pounds is hard to envision. He looked as fragile as tissue paper. Yet week by week progress was made in small increments.
The week he was discharged from Hershey Medical Center I was petrified. Never did I feel so inadequate or in secure caring for someone. Once home he flourished and grew as babies do. The sickness during the holidays was later recognized as acidosis, catabolism. Not having had sufficient calories and dehydration and infection unveiled Michael’s rare disorder, Glutaric Acidemia-Type 1.
This would be the start of a life long medical journey. A serquatous path led us to travel around the world literally. GA-1 is an autosumol recessive inborn error of metabolism. Protein, especially lysine and tryptophan can’t brake down to become energy for the body. They are converted into toxins in the bloodstream in turn injuring he brain. This neurological insult can be life threatening and irreversible. For Michael the aftermath of his illness left a wake of destruction in its path. Reverting him back to a newborn stage. Dystonia, choriathrotosis movements reminded me of a person with cerebral palsy. Unable to walk or talk or eat by mouth led to intensive therapies.
As parents we want absolutes. Nothing uncertain. This would not be the case for Michael. Would he accomplish the most basic skills was a hugh question mark?. As he grew we saw to it his life was full of activities. Once stabilized we as parents involved ourselves proactively with efforts to alleviate suffering or injury of children with this rare genetic anomaly. So became the non profit organization IOGA (International Organization of Glutaric Acidemia). The inspiration became reality.
IOGA mission includes advocating expanded newborn screening, hosting and sponsoring medical conferences, linking families with each other, collaboration between clinicians, researchers and parents. IOGA funded research for several years with doctors at Hershey Medical Center. Invest gating the possibility of stem cells to reverse brain injury of affected children.
We were a resource tool aiding parents on locating specialists to treat there children. Next came the inspiration of a winery. A one of a kind wine business set up for philanthropy. Named the Michael Charles Winery after our son the business made monies to fund our non profit works. All profit after cost of goods was donated to our IOGA causes and mission.
As Michael grew so did his medical complications. The list was endless full of surgery after surgery. Hips, legs, bowels, stomach. Thru it all he kept his smile and taught us all humility and compassion on a daily basis. Between surgeries when well enough we filled his life with “play”. This boy had a passport and traveled to Europe before he was three. Michael swam with dolphins in the wild (not at Disney) in Florida. Took hot air balloon rides, rode roller coasters, had a pool and a trampoline.
Snow tubing and adaptive skiing and sleding were all part of his repoitre. Michael’s therapy camps took him to Canada, Mississippi, Chicago and Pittsburgh doing conductive education with therapists from Budapest. The Peto Institute curriculum. Like any boy Michael loved high speed trains. Old western movies, swimming, jump on the bed with his cousins and babysitters and Mr. Rogers.
What truly is mystical to me was that this boy did not eat by mouth, walk or talk and yet he loved life. In all my travels in this world of all my schooling, classes, colleges I will never have had a greater teacher or hero then Michael Charles Metil.
For thirty five years Fred Rogers had been the father of our souls, reminding us that we are likeable just the way we are, reminding us it’s a good feeling to know your alive, and telling us we are special on the outside and the inside. That is what Fred Rogers and Michael Metil said to us each day. They made us want to be good neighbors.
Michael inspired his cousin to become a special education teacher. His babysitter to become a nurse, his parents to start a foundation and open a winery in his name sake. As time passed by so did Michael. He graced us all with his presence for fifteen summers dying in June 2009. At his funeral viewing service my Amish friends Amos and Susie approached me and said “No simple act of kindness goes unnoticed. Even if it’s a glass of water given to a child it’s recorded in a book. Surely these children deserve the highest chair in God’s kingdom” amos said. He would know. He buried two of his own son’s with the same disorder.
So in closing I tell you this. Be the change and when you change the world changes too.
Michael Charles Metil born January 20, 1994 died June 27, 2009.