McGuire youth fights her toughest battle

MCGUIRE AIR FORCE BASE, N.J. -- She has spent more than 150 days in the hospital. Her parents don't understand what she has. The doctors can't diagnose it. This 13-year-old girl is suffering from a disease no one knows how to treat.

Three years ago, Ada Bogle, daughter of Tech. Sgt. Kevin Bogle, 305th Aerial Port Squadron, contracted a rare neurological disease.

"It was strange at first," said Ada's mother, Crystal Bogle. "No one knew what was wrong for the whole first year she was sick."

Ada had been sick off and on in 2001. In September 2001 she woke up with a bad headache and abdominal pains that never went away. It was then that her family realized she had a serious illness.

"In most cases, this type of disease is genetic," said Dr. Lois Bartoshesky, acting chief of medical genetics at Dupont Hospital for Children. "But in Ada's case there is no family history of it."

While the doctors cannot say what exactly Ada has, they do have an idea of what is wrong. Ada has a metabolism deficiency in her cells. This deficiency causes Ada to have abdominal pain, intestinal disorders, digestion trouble and muscle weakness. The disease has also brought Ada's energy level to about 35 percent of that of a normal child her age.

"We are giving her medicine that sometimes helps, but it doesn't always," said Doctor Bartoshesky. "I wish we could give a one word answer about what she has and make it all better, but the truth is we are still figuring it out."

In February 2002, as a result of her demylenation and gastric paralysis, Ada lost use of her gastrointestinal tract and the ability to eat and drink.

Ada had to receive nutrition from feeding tubes until last November, said Mrs. Bogle. The feeding tubes failed in November and Ada had to have a port placed in her chest to receive total parental nutrition through an IV. She now has to be on an IV 14 hours a day to receive all the vitamins and nutrients her body needs.

"Other kids get stomach aches, but not one that lasts for three years," said Ada. "Not being able to eat is really different. I suppose reality still hasn't stuck. It's like I am waiting to wake up again one morning and be fine. But I've adjusted to what has happened and am dealing with it."

Because of the demands her condition places on her, Ada is unable to attend school. Her mother home schools her.

"Luckily, the disease is not affecting her intelligence," said Doctor Bartoshesky. "She remains a bright and cheerful young girl."

Her intelligence is displayed in her ninth grade level, while only in the eighth grade. Ada is also extremely Internet savvy, according to her mother.

"Ada has a Web page that she and I keep updated on her condition," said Mrs. Bogle. "People following Ada's condition can sign her guest book and write her messages."

Through her Web page, Ada's positive attitude and spirit shine. With the support of her family, Ada remains upbeat through all that she has gone through.

"My whole family is super supportive," she said. "We are always laughing. That's how we get through things. It takes a lot to turn a bad situation into a funny joke but we always seem to."

Ada also receives an abundance of support from her church.

"The people in church keep me in their prayers and come to see me when I am in the hospital," she said. "They have helped our family get through everything. I get a lot of support from a bunch of people."

Ada has recently received support from the Make-A-Wish Foundation. Her doctor signed her up for a wish that is currently being worked on. Ada's wish is to play a role in a movie.

"Ada is very ambitious and has goals of being a writer/actor in wholesome films," her mother said.

According to her mom, Ada handles everything very well and is very brave and strong. She doesn't let her illness stop her in anything and advises others to do the same.

"Just remember to pray and laugh," she said. "It'll be alright; I know that for sure."

Visit Ada's Web page at www.caringbridge.org/nj/ada and send her a message.