Local student battles Juvenile Huntington’s Disease

By Alisha Weight

Virginia Buck is a 3rd grader here at TAES; she was diagnosed with JHD in 2008 when she was just three years old. According to Lisa Buck, Virginia’s mother When Virginia was about 2 she was always complaining about leg pains, she went through multiple tests, but still nothing was found right away. Two years past and still nothing; after they gave her a genetic test, it came back positive for JHD.

JHD is a neurological degenerative terminal brain disease. JHD refers to Huntington’s Disease that has an age of symptom onset ranging from infancy to 20 years of age.

JHD takes away all of a child’s abilities over time; children who develop symptoms at a young age have a variation of differences in the disease progression than that of adult onset.

According to JHDkids.com, JHD is also known as Huntington’s Chorea coming from Dance Chorea meaning dance like movements but not all HD patients show involuntary body twitches.

Often the disease progresses more aggressively and patients lifetime is anticipated to be anywhere from 3- 10 years once diagnosed.

Symptoms may come and go; only estimated 10% of people at risk for HD develop the Juvenile form, but it’s hard to get accurate numbers.

“This disease does not discriminate against age, race, or creed and it does not skip a generation,” John Updike, Virginia’s step father, said.

Some of the symptoms are impaired cognitive function, muscle spasms, seizures, myoclonic jerks, behavioral problems, overactive bladder, impulse control, and obsessive compulsive disorder.

“JHD affects the family emotionally, physically, financially, in all aspects it impacts the whole family,” Lisa Buck, Virginia’s mother, said.

“It’s hard to live with JHD. I want to try to complete 8th grade, but I want a cap and gown because it isn’t fair I won’t get to have one,” Virginia Buck, elementary student, said. “I know I won’t be able to graduate. I didn’t do anything to deserve this.”

Some of the things Virginia enjoys doing are digging for bugs, spending time with her family and her cat, talking to her close friends, the Mukka family, and collecting pennies for “Pennies for Virginia’s Thoughts.”

Pennies for Virginia’s Thoughts is a program her mother and step dad put together, people have sent card, notes, packages with pennies in them for Virginia and then they are saved up and eventually sent to John Hopkins Hospital to help towards research for a cure for JHD. There are multiple cans around the local places in Tyrone.

“She battles this disease daily and she will continue to do so, everything is a struggle for her, it takes patience and understanding to deal with Virginia,” Lisa Weight, Virginia’s mother, said.

According to books and research there is no known cure or treatment for JHD or HD; some medications can relieve symptoms, however research has yet to a means of conquering or even slowing the deadly progression.

“A little girl who has JHD and has a wish to help the fight to live her way,” Jane Mervar, A parent of three children with JHD, said.