Support For A Special Healing Place Where Kids Can Still Be Kids

By Kaaren Valenta

Members of the Preszler family are raising money for the Connecticut Children’s Medical Center (CCMC) in Hartford by holding a tag sale this weekend at their home on Overlook Drive in Newtown and by running in a half marathon in October.

The Preszlers have been involved with the medical center since daughter Julia was born seven and a half years ago.

“I have scoliosis,” Julia explained in an email to The Bee. “It means you have croked bons [crooked bones] in your back. I started going to the hosptal [hospital] when I was two weeks old. I liked it when I got pulled around in the red wagon.”

The daughter of Cristal and Todd Preszler, Julia has congenital scoliosis, a condition often accompanied by kidney and heart problems.

“Julia has some kidney issues and reflux. She could have had heart issues, but fortunately she didn’t,” Mrs Preszler said.

The Preszlers knew before Julia was born that there would be problems.

 “Before she was born they could see the scoliosis in the ultrasounds,” Mrs Preszler said.

Julia has had two spinal fusion surgeries. The first was done when she 9½ months old.

“Julia was born with a 25 percent curve in her spine caused by what is called a unilateral bar, where the bones are connected — stuck together — on one side,” her mother said. “The doctors told us that it would increase and by the time she was 5 months old, it was 50 degrees.”

The surgeon performed anterior and posterior spinal fusions, then Julia spent six months in a body cast, followed by six months in a brace. When she was 2½, the entire process was repeated.

“There was a ten percent chance that the fusions wouldn’t take, and we were part of that number,” Mrs Preszler said.

During the months that Julia wore the casts they were replaced several times.

“We used to go to the hospital constantly,” Mrs Preszler said. “We went every seven or eight weeks to remove and replace the casts. Since her last surgery, the time keeps increasing between appointments.”

Neither of the Preszlers’ other two children, Scott, 4, and Nick, 2, have scoliosis. But the entire family is involved with helping the hospital in its fundraising drive.

“The dedication of all the staff at CCMC is unbelievable,” Mrs Preszler said. “They are so caring and work very long hours, day after day, year after year, at personal sacrifice. I know that the doctors start rounds at 7 am, yet at 7 pm they were answering my emails.”

The children receive special treatment to make their hospital stays much less frightening, she said.

“The children get Looney Tune ‘hospital scrubs’ to wear before surgeries and battery powered jeeps to ride into the emergency room,” she explained. “They allow kids to bring their special ‘lovey’ into surgery with them and never once lost Julia’s beloved ‘bup rag’ even though it looks remarkably like hospital linens.”

“Each time [Julia] visits, she comes away with at least stickers. But during some of her bigger procedures, she was given toys. Her favorites are Tinky Winky and Winnie the Pooh with a bunch of roses.

“These things are so important as they are the things that she remembers from the visits, not the surgical procedures or pain,” Mrs Preszler said. “They are also the things not covered by insurance, but are most likely provided by donations from people and organizations.”

Julia agreed. “We want to give them money for toys and things they need,” she said. “It is nice [for children] to know that people are thinking of you when you aren’t at home where all your toys are.”

The Preszlers decided to do whatever they could to help the CCMC this year.

“To raise money, we are having a tag sale and I am having a store selling painted rocks, pinecones with glitter, hand-drawn gift bags with a matching card,” Julia said. “My brothers and I are having a lemonade stand at the tag sale with lemonade, of course,  [and] bread made by my grandma out of zucchini from our garden, and cookies.”

(Julia’s grandmother is Shirley Fredlund of New Milford, who nearly 14 years ago started the Voice For Joanie, Inc, organization that developed a computer-generated speech system for persons diagnosed with amyotrophic lateral sclerosis (ALS), a progressive disorder of the nervous system  also known as Lou Gehrig’s disease.)

Neighbors and friends also will be contributing to the tag sale, which will be held Friday, August 12, and Saturday, August 13, from 8 am to 4 pm. All profits will go to the CCMC. In addition, Cristal Preszler is running in the 12th annual Hartford Marathon on October 8 to raise money for the hospital, which is a full-service hospital dedicated to improving the physical and emotional health of children.

“I will be running a half-marathon,” Mrs Preszler said. “It’s my third marathon. My goal is to run the 13.1 miles in under two hours. When I told [Julia’s] surgeon that we were doing these things, he was the first to offer to donate to the cause. That really shows how special these people are.”