Angela and Terry at home (photos by HDSA-San Diego).

An astounding level of disease

Terry inherited Huntington’s from his father.

Mothers usually pass on HD with their own level of genetic defect, but for reasons as yet undiscovered, fathers can pass it on in a far worse form.

Everybody has the huntingtin gene, with repeats of the CAG nucleotide of no more than 30. A repeat count of 40 or higher definitely causes the disease and, the higher the number, the earlier the onset and the most pronounced the symptoms.

Terry inherited an astounding 82 repeats, many more than his father’s own count. As a result, Terry started showing symptoms not long after his adult father’s onset.

Aggressive behavior

Terry’s father did not tell his wife Angela about Huntington’s in his family until after they conceived Terry, not until the father started showing his own symptoms such as falling down in the shower, dropping dishes, receiving low job performance evaluations, and getting into a car accident.

“I didn’t know anything about this disease,” Angela recalls. “I was very angry with him. But I felt compassion, too.”

After the disease led him to act aggressively towards his family and caused the couple to temporarily lose custody of their children, he separated from Angela and moved back to his native Indiana.

Breaking Christmas gifts

Terry had precious little normalcy in his life.

“When he was born, he was okay,” Angela says. But around 18 months of age – still before Angela knew about HD – the doctors noticed that Terry’s motor skills scored on the low side. “But they didn’t know what it was,” Angela continues. “He grew fine.”

Terry learned to ride a two-wheeler bike at age three, and he talked up a storm.

“You couldn’t get him to be quiet,” Jennie remembers.

Terry’s health started deteriorating rapidly at age 5, and he also began displaying the behavioral difficulties typical in Huntington’s.

“At Christmas time, he wouldn’t play with his toys – he would break them,” Angela explains. “He’d break things just to break them. We called him ‘the thrasher.’ He’d break all the crayons and poured all his paint out. He’d paint the walls.”

HD like a ghost

Terry began to stutter and to trip, and scrapes and bruises began to cover his legs and arms.

“He’d be standing still, and just out of nowhere he’d fall, like a ghost pushed him,” Jennie says.

Terry could no longer be the normal boy he wanted to be. He stopped riding his bicycle, for example. Frustrated, Terry began to inflict his anger on himself, slamming his fist on his knees.

At age 7, as he lost his speech, Terry started seeing a neurologist at the Naval Medical Center San Diego, where Angela’s family has health benefits. She prescribed special braces for his feet that he still uses as night splints. He undergoes physical therapy with California Children’s Services, a state agency, and receives speech therapy at his school.

Because Terry catches other sicknesses easily, on nights and weekends, Angela mainly ensures he stays home.

Recently, Terry has gotten injections of Botox in his hands and legs in an attempt to relax the muscles that have tightened and become deformed with the progression of the disease. He may need surgery on his twisted left foot.

A walking skeleton

The family’s biggest challenge is helping Terry retain weight. HD patients burn lots of energy and have difficulty swallowing. Terry currently weighs 70 pounds, less than his nine-year-old brother Richard.

Terry took in food and liquids through a syringe or a straw that he pinched with his lips, but he has weakened to the point where he cannot even use the straw.

“He was like a walking skeleton,” Jennie recalls of one low point in Terry’s struggle to retain pounds. “We feed him as much as we can.” In addition to lunch, he eats snacks throughout the day at school. Someone must help Terry eat in order to assist him in the event of choking.

“We have been trying to get his weight up for a year now, and he’s gained five pounds,” Angela says.

But that may not be enough. Terry’s doctor has broached the idea of a feeding tube with Angela. She has hesitated, but remains open to the idea.

“If that’s what she wants to do, we’ll do it,” Angela says with a mixture of resignation and determination.

Terry demonstrates his touch-screen computer. Strong and striving for perfection But Terry has not let Huntington’s disease get in the way of enjoying life and doing his best at school. He often finishes his homework early by doing it during the school lunch period. “He has to get everything perfect,” says Jennie. “He does it over and over again until it’s perfect.” Terry has strong presence of mind and is very aware of everything going on around him. Angela believes that Huntington’s disease has deprived Terry of his physical powers, but not his mind. He communicates effectively with his augmentative communication device, a touch-screen computer with a speaker that repeats the letters and words Terry taps out. When a visitor recently stopped by the Leach household to interview the family, Terry used it to answer the questions about his favorite activities. He made it very clear that he wants an iPod Touch media player for Christmas. “He gets up with a smile on his face every day,” says Angela. “He’s very strong-hearted. I always tell him how he makes me proud.”  * * * In recognition of his fight against Huntington’s disease, Terry has been named one of seven “Heroes of the Carlsbad Marathon,” to be held on January 24 in Carlsbad, Calif. The Carlsbad Half Marathon takes place the same day. Some two dozen half marathon runners will race to raise funds for the San Diego chapter of the Huntington’s Disease Society of America (HDSA). Click here to read more. HDSA-San Diego needs 40 volunteers for this event. To help out, please click here. Click here to read Gene Veritas’s blog entry on the Leaches. Watch the Leach family (Terry, Angela, Richard, Jennie, and Charles) by clicking on the play button in the video below.