Alex was born at Fairfax Hospital on March 29, 1975. Within hours doctors noticed Alex was in distress. They began a frantic effort to diagnose his problem. It was assumed that it had to do with digestion of food and so nourishment was withheld while the detective work continued. For ten days various theories were tested, all failing to diagnose the problem. Alex’s frantic parents contacted the National Institute of Health in Bethesda, and a doctor was dispatched to Fairfax Hospital, blood was taken from Alex, and flown to Denver, Co., which was then the only place in the U.S. With a lab prepared to test for a disease then called pyroglutamic aciduria.
The disease had been noted in three cases in Sweden but not detected elsewhere. The lab confirmed the diagnosis and Alex became the first case in the U.S. Another characteristic had been discovered in the ten days of intense pain which he had survived without food – his indomitable spirit.
Alex was born without the ability to produce the (then little understood) enzyme glutathione. Part of the effect of this disorder was acidosis of the blood which results in damage to the nervous system, but which can be partly controlled by a lifelong use of antacids.
Alex developed into a handsome and sunny child with the appearance of someone with cerebral palsy. When he reached five years of age, Falls Church schools welcomed him to the kindergarten program at Mt. Daniel.
Entering the first grade was not possible as Falls Church schools felt they were not capable of serving students with intellectual disabilities and preferred to transport city students with such disabilities to other jurisdictions and pay their transportation an tuition costs.
Through the efforts of Alex’s parents and the parents of other kids thus excluded, Falls Church schools changed its policies and began educating all children in the early 1990s. Alex became the first student with intellectual disabilities to enter George Mason High School.
Alex’s cheerfulness and determination were everywhere on display at Mason. His teachers were delighted with him and he was sure to express his appreciation for their efforts. He became a water boy for Mason’s football team. Alex was also active in the school’s television production classes and on the theater stage crew.
When Alex teetered across the stage to receive his graduation certificate, he received the loudest applause of the ceremony.
Alex’s disease progressed, making him resort to using a walker to get around. He was also, as a result of his disease, by then legally blind.
Alex’s determination and optimism only grew during these years and he managed to work in several places in the city, including Don Beyer Volvo and the old Red Lobster restaurant on Broad Street, for example. Pursuing a lifetime fascination with aviation, he managed to get a job at Dulles airport and commuted there by himself using the Washington Flyer bus from West Falls Church Metro station.
Two of the jobs he loved best were at the Seven Corners Home Depot and the old Merrifield Metroplex theaters wehre he worked for five years. Alex was a greeter at Home Depot. He was greeting people at the door the eveining the Washington area snipers shot and killed a woman in the parking lot.
Home Depot told us that they received more positive letters and emails about Alex when he worked there than anyone at the store. People said that they were upset about some home repair need when they walked into the store but, by talking to Alex and seeing his kindness and cheer in the fave of his obvious difficulties, they realized how manageable their problems were.
In his early thirties, Alex decided he wanted an apartment of his own, but realized he needed help with his independence. Finding a place like this in the Northern Virginia area was not possible. Fortunately, Hope House offered exactly what Alex wanted in Virginia Beach.
Alex moved to Virginia Beach in August 2008.
He told a reporter for a local newspaper there, “I love my parents, but living with them is boring.” Alex’s boring parents hated him live so far away, but loved his independent spirit and opportunity to be on his own.
In Virginia Beach, Alex worked at the Cinema Cafe, joined a church, participated in advocacy groups and was part of a special arts performing group. Most importantly, he fell in love with a beautiful young woman, who also has cerebral palsy, whom he had hoped to marry.
To the end he was full of happy plans and optimism. His sudden death from a heart attack shocked his family and many friends. His life was too short, though he made the very most of it.
A memorial service for Alex will be held Saturday, April 18, at 4 p.m. at the Falls Church Presbyterian Church, Fellowship Hall, 225 E. Broad St., Falls Church.
Donations can be sent, clearly marked “in memory of Alex Ripley”, to Hope House, 801 Boush St., Suite 302, Norfolk, Va. 23510.