ORIGINALLY WRITTEN BRENDA CONYERS
Before his life changed, Andy Holt was active in the Boy Scouts and, while on a Scouting trip, he even saved a young girl who was drowning in a Colorado river.
He completed his Eagle Scout project for Boy Scouts in February 1999 by coordinating a 40-mile lakeshore clean-up at the Marion Reservoir, which brought in two and a half tons of trash in six hours with 95 participants.
Andy also set sports records at the Marion Middle School, played football and marched in the marching band.
But for the past five years Andy and his family have been struggling through medical ups and downs of a rare and debilitating disease.
Andy Holt has Postural Orthostatic Tachycardic Syndrome (POPS), a chemical imbalance in the brain that causes his blood to pool in the lower legs and abdomen.
The symptoms of the condition include a rapid heart rate, mild-to-severe dizziness, migraine headaches, intense exhaustion, depression, and, at times, a high sensitivity to light and sound.
“When he is not miserable,” said Terry Holt, Andy’s father, “he is often uncomfortable.”
Exertion and heat aggravate the symptoms and can cause Andy to become bedfast up to a week at a time.
The disease began showing symptoms five years ago when Andy complained of dizziness and extreme weariness.
“At first I thought he was trying to get out of doing chores,” said his mother, Ann. “But we soon learned there was something more going on with him.”
At first the medical community thought Andy was having allergy problems. He began missing a lot of school because of dizziness and the exhaustion.
“It is hard to watch your son lean hard into a wall and creep along because he can’t walk,” Ann Holt said. “The whole thing is hard because you hate to see your child hurt.”
As a freshman, Andy had begun an intensive allergy treatment with weekly injections. But the shots did not help with the dizziness, and Andy missed about 10 weeks the first semester of 1999.
In November 1999, he and his father drove to the Mayo Clinic in Rochester, Minn., for the first of four visits for testing. The extensive tests ruled out any serious causes for Andy’s dizziness, but it was determined he had an autonomic nervous system dysfunction, or POPS.
By 2000 Andy had missed about a year and a half of school. His dreams of continuing his football career had ended. Despite tutoring and efforts to keep up with his studies, Andy had fallen way behind.
“It has been tough on him to lose out on school, church, Scouting activities, and teenage socialization,” Ann Holt said. “And he really gets lonesome to visit with kids his own age.”
Andy admits to having some good days and bad days. Last week he was able to attend school for four days. He wants to continue his studies, and is doing so by taking classes at the high school and through the Marion County Learning Center.
As part of his physical education requirements, and doctor’s orders, Andy sometimes will go out for a bicycle ride.
“He enjoys being out,” Ann Holt said, “but sometimes people see him and wonder how he can do that with such a serious condition.”
While the condition seemed to manifest itself in Andy’s early teens, there is some speculation the symptoms may disappear as he gets older.
“The future is unknown,” Ann Holt said. “We just don’t know, but we trust that God knows and the future is in his hands.”
One expression of the disorder is Andy’s internal clock.
“Sometimes he unable to get up during the day, but can get up for the night,” Ann Holt said.
On those nights Mom and Dad take turns staying up with him.
Ann Holt says she appreciates the one-on-one time with her son, but she admits it can also take a toll on her energy.
Andy has a sister, Laura, in the seventh grade, a brother, Louis, in the fourth grade, and another brother, “Sweet William,” who is 3 years old.
Ann Holt said Andy’s problem has affected the whole family as they have worked together to meet his needs as a team.
“Sometimes when the noise is really bad for him, Terry takes the younger kids out to do something, and sometimes I take them,” Ann Holt said.
“When people are whispering, it sounds to me like they are just yelling,” Andy said.
“It takes extra money to take the kids out to eat or to a movie, but most of all, I miss being able to go and do things as a family. A part of us is always missing.”
Sometimes, Ann said, the younger siblings don’t understand why Andy gets more attention than they do.
Besides support from family and friends, the Holt family says their faith has held them together.
“Sometimes when it is a bad day for him, his sister will go pray a rosary for him,” Ann said. “And we keep going by praying, listening to Christian radio, reading the Bible and just trusting that God is in control.”
For Andy’s “good” days, his father and several other adults, have organized a Venture group for boys and girls who have graduated from the eighth grade up to 21 years of age.
It is, as Andy’s describes, an off-shoot of Boy Scouts, but the group is open to boys and girls.
The county-wide program allows members to participate in high-adventure activities like cross-country skiing, canoeing in winter, and local physician Kim Hall, a certified scuba diver, hopes to teach the members about diving and take them on a trip.
Andy may not be able to do some of these activities, but he enjoys organizing them for other kids.
He said he really misses seeing kids his own age.
“I miss talking to them,” Andy said, “and I kind of get tired of people asking me all the time, ‘Are you all right?'”
Anyone wishing to visit Andy, the family requests a call first to be sure he is well enough to visit. They can be reached at 620-382-2949.
Or you could drop a card to him at 208 N. Lincoln, Marion.