September 2, 2014

Charitable stand to open during fair week

Judy Hart, left of Gardner,  poses with Ellie Lewis, Edgerton, in a lemonade stand  at Festival on the Trails. Judy has cystic fibrosis and will soon need a double lung transplant. Submitted photo

Judy Hart, left of Gardner, poses with Ellie Lewis, Edgerton, in a lemonade stand at Festival on the Trails. Judy has cystic fibrosis and will soon need a double lung transplant. Submitted photo

Danedri Thompson
dthompson@gardnernews.com
Making lemonade from lemons will help one local 16-year-old breathe a little easier.
At least that’s the hope of Live2Love Judy Hart, a local organization raising money for a Gardner Edgerton High School junior’s double lung transplant.
During fair week, the group will host a lemonade stand at the First Presbyterian Church in Gardner to help fund expenses for the transplant.
Doctors diagnosed Judy Hart with cystic fibrosis at birth, after doctors discovered a bowel obstruction.
“Probably her first 18 months, Judy spent in and out of the hospital,” her mother Mary Hart, Gardner, recalled. The newborn was failing to thrive, due to cystic fibrosis. The disease, also known as mucoviscidosis, affects every organ in the body that secretes fluid. Most critically, an abnormal ability for the cells to transport chloride and sodium leads to thick mucous secretions that over time scar the lungs. The genetic disorder can also create cysts in the pancreas and discourage growth. In males, it can cause infertility.
For Judy, the disorder has lead CF-related diabetes, due to its affect on her liver, and a myriad of hospitalizations for lung-related illnesses. Today, she takes more than 30 pills per day and numerous inhaled medications.
Her lung function was at 19 percent at her last doctor’s appointment. Judy was listed on the inactive donor list in March 2010.
“She did fairly well in her toddler to pre-teen years,” Mary said. “And then she started getting more and more lung infections that required lengthy hospitalizations.”

Volunteers pose in the lemonade stand in downtown Gardner in June. The charitable group will re-open its stand during fair week at the Presbyterian Church. Submitted photo

Volunteers pose in the lemonade stand in downtown Gardner in June. The charitable group will re-open its stand during fair week at the Presbyterian Church. Submitted photo

Vickie Chandler, a teacher at Pioneer Ridge Middle School, first met Judy when she was a student in Chandler’s class. Her classes have been assisting in raising funds for Judy ever since.
“She’s a great, beautiful life, but CF gets in the way of that a lot,” she said. Her students last year just wanted to help.
“One of the first things we did was my class had a bake sale. My kids cooked all of this stuff and we raised almost $700 in three days,” Chandler said.
Judy spoke to the class and showed them the equipment that she used, but the students learned other things through the fundraising effort as well.
“We learned about advertising and how to make money and count change,” Chandler said.
The  Live2Love Judy Hart Foundation was officially organized in April.
“We just decided that Mary is a single mother. She’s a nurse. I know how hard it is financially – just what they have to go through on a daily basis as far as medical treatments,” Chandler explained.
The group hopes to raise $60,000 to help Judy and her mother with living expenses when Judy goes on the active lung donor transplant list. Through efforts like a lemonade stand at Festival on the Trails and other fundraising events, the group has raised approximately $30,000 to date.
Being moved to the active list will require Judy and Mary to move to St. Louis to await lungs for transplant. That won’t occur until her lungs deteriorate to a certain point.
“Judy’s already met the surgeon. She gets evaluated every six months by the transplant team so that when she does need her lungs, she’s not a new customer,” Mary explained.
In the meantime, Mary said the goal is keeping Judy as healthy as possible for as long as possible.
It’s been a long road.
Last June, Judy weighed just 88 pounds. After she was admitted to the hospital, Judy gained 20 pounds in three weeks, but the rapid weight gain raised havoc with her diabetes.
“You’re just dealing with so many things. We know eventually she’s going to need lungs, but we’re trying to hold out as long as we can,” Mary explained. “The older you are, the more you get passed puberty – the bigger the lungs, the better.”
The Children’s Organ Transplant Association, through whom the local group is raising money, estimates that the Harts will need $60,000 for living and other expenses as Judy awaits new lungs and recovers from the transplant.
The money Live2Love raises is put into an individual fund for Judy through COTA. When Mary spends money for costs related to Judy’s transplant, she submits a bill to COTA.
“It’s not my money,” she explained. “It’s all through the national organization.”
Mary said she hopes to stay in the Ronald McDonald House or something similar to decrease living expenses when they make the temporary move to St. Louis.
“I want to have as much money available for medical costs that are not covered by insurance,” Mary explained. That may include thousands of dollars in post-op medications each month, and Judy and Mary and at least one other adult caregiver will be expected to remain in St. Louis for up to six months after Judy’s transplant. The length of the stay will depend on how the transplant goes.
Though the lung transplant will help Judy live a more normal life, it won’t solve everything.
“It has affected so many of her organs, and getting new lungs isn’t going to change that,” Mary said. “But it should hopefully help with her endurance and her ability to breathe.”
The Live2Love group will host a lemonade stand during the latter part of fair week at the Presbyterian Church in Gardner. They will also be selling t-shirts. The group also has a Facebook page. They can be found by searching “Live2Love Judy Hart.” Donations can also be made online at the COTA site in Judy’s name: http://cota.donorpages.com/PatientOnlineDonation/COTAforJudyH/

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