Daily Independent (Ashland, KY)

September 15, 2013

East Carter freshman will get up-close look at Lady Liberty

Mark Maynard
The Independent

ASHLAND — Morgan Jones has had a passion and curiosity about the Statue of Liberty for as long as she can remember.

The 14-year-old freshman at East Carter High School — and her family — will soon be getting an up-close view of the iconic national monument in the New York Harbor.

Jones’ wish is coming true though the efforts of the Lexington Dream Factory, an organization who makes dreams come true for children who are either terminally ill or have a chronic disease.

Jones has Glutaric Acidemia Type II (GA2), a disorder that prevents her body from breaking down fat and proteins. It is a genetic disorder that will be with her for a lifetime, her mother said.

She has to eat every three hours to make sure there is always glucose in her body and her immune system can be affected.

“Flu season is very scary for us,” said her mother, April Keelin. “We have to regulate her diet and watch what she eats.”

Morgan doesn’t complain about her illness, her mother said. She enjoys school, where she is a straight-A student and plays trombone in the high school band. There are not many days she doesn’t have a smile on her face, April said.

“She never complains,” her mother said. “She can’t eat most of what we eat and never says a word about it. I really think she’s an inspiration to a lot of people. I know she inspires me.”

Morgan’s disorder is extremely rare, Keelin said. Her daughter is one of only “40 or 50 people in the whole world” who suffers from the illness.

“When she was little, she was in the hospital a lot,” Keelin said. “She’s been pretty healthy the past couple of years.”

Keelin applied for the “wish” from the Lexington Dream Factory and they learned she had been chosen a couple of months ago. She was offered the opportunity to go anywhere in the United States and chose New York City because of her affection for the Statue of Liberty.

Her room is decorated in Statue of Liberty décor, including several miniature statues. They plan on climbing the 354 steps to the top of the crown where the family will be able to look out over New York City.

“She could have gone anywhere and this is where she decided she wanted to go,” April said. “Her whole room is decorated in Statue of Liberty. She has loved it since third or fourth grade. She has a lot of stuff — statues, blankets, pillows.

“I don’t know why, I’ve just always loved it!” she said. “That’s where I wanted to go.”

The trip will be Oct. 2-6 and the family, April’s husband Todd and two other children, will be coming along. They will also be taking in a Broadway play, “Lion King,” and take a cruise on the Hudson River, Keelin said.

“We’re planning on going to the Empire State Building and Central Park,” she said.

Morgan has been to NYC once before with her father, Chad Jones, for one day, Keelin said. “This time we’re going all the way to the top,” she said.

With only a couple of weeks until the trip, April said the family is preparing for the long climb by taking some turns on the elliptical in their home.

“I hope we can make it,” she said.

Meanwhile, Morgan is beaming about her trip of a lifetime. She also recently took second place in the state in the “Yes I Can” demonstration speech competition through the 4-H. She will be going to Louisville in November to accept the award.

“Even with all these problems, she is the happiest kid I know,” her mother said. “We’re very proud of her.”

Keelin, who is a music teacher at East Carter, said her kindergarten teacher Brenda Barnhill and Missy Pennington, who has been Morgan’s personal aide since first grade, should receive the credit for Morgan’s love of school. “I look forward to going to school,” she said.

Besides school, she is also involved with the youth group at Unity Baptist Church, where she plays in the church orchestra.

Keelin said Morgan was diagnosed with the disorder when she was 3½ years old. They began running tests on her at 5½ months but, because of the rarity of the disorder, couldn’t confirm the diagnosis for three years.

“We were at Cincinnati Children’s Hospital for two weeks (when she was 5½ months and they treated her when we left as if she had this disorder,” Keelin said. “But it took that long to get the definitive test back. They had made the right call.”

MARK MAYNARD can be reached at mmaynard@dailyindependent.com or (606) 326-2648.