Event raises funds and awareness for painful disease

Published Nov 29, 2013 at 4:06 pm (Updated Nov 29, 2013 at 4:06 pm)

Pain is a part of daily life for 17-year-old Molly Czaikowski of Carnegie, but for one day she was able to put the pain aside to focus on something that is dear to hear heart – raising awareness for two diseases that she has to live with every day.

On Nov. 23, the Carnegie Presbyterian Church, located atop a hill in Collier Township, hosted Molly’s Ray of Hope, a fundraiser benefitting Dysautonomia International and The Children’s Institute of Pittsburgh.

“This is the only thing we can do,” is raise awareness of the diseases Czaikowski is fighting, said her mother, Renea Holden.

About $1,500 was raised on Nov. 23, and Holden said she’s hoping to raise $2,000 by the end of the year.

About three years ago, Czaikowski was diagnosed with a type of Dysautonomia called POTS, which stands for Postural Orthostatic Tachycardia Syndrome. POTS is one of many disorders of the autonomic nervous system, which controls breathing, heart rate, blood pressure, digestion, body temperature and sleep cycles. Because of POTS, Czaikowski often gets dizzy and feels faint. She is also intolerant to temperature and motion changes.

Czaikowski also has RND, or Reflex Neurovascular Dystrophy, which is described as an unrelenting, burning and excruciating chronic pain. Czaikowski’s RND was brought on in 2012 after a bee sting, but it could have been caused by any type of trauma.

After the initial bee sting, when it should have been healing, the pain was getting worse. Two days after the sting, she was on crutches, and a few days after that, she was confined to a wheelchair. Eventually, Czaikowski was diagnosed with RND by Dr. Jonathan Pletcher of Children’s Hospital of Pittsburgh of UPMC and was transferred to the Children’s Institute of Pittsburgh for therapy.

After less than two weeks at the Children’s Institute, Czaikowski was walking again.

In addition to the fundraiser, Czaikowski’s family was successful in helping to declare November as RND awareness month in several local communities. The borough of Carnegie, as well as the townships of Scott and Collier, declared November as RND awareness month. Next year, the family hopes to add the City of Pittsburgh and even the state to that list.

Holden said her daughter is still in physical therapy at the Children’s Institute’s satellite office in Bridgeville, but she is doing better. Right now Czaikowski is homebound, but attends classes a few hours a day at Parkway West Career and Technology Center. When she graduates this spring, she will have her certified nursing assistant license. Czaikowski said she wants to go to the University of Pittsburgh’s pre-med program after she graduates high school.

“I was extremely happy when they decided to do this,” said Czaikowski’s godmother Bonnie Harrist. “I’ve seen Molly in pain and taken her to the ER before. It’s very important to me, “to raise money for the cause),” she said.

Katy Haller of Scott Township is a junior at Chartiers Valley High School and is friends with Czaikowski. She was also diagnosed with RND.

“I have full-body pain,” she said. She said she and Czaikowski became friends because they can relate to what each other is going through on a daily basis.

Lauren Vermilion, community outreach manager at the Children’s Institute of Pittsburgh, also attended the fundraiser.

“I’m so proud to be here and support the family. They are just so strong,” Vermilion said. “We want to continue to support our patients throughout their lives. Anytime we can come out and celebrate children, we’re glad to be there.”

It was important that the money raised at the fundraiser went to the organizations, and not to Czaikowski.

“I told my mom I don’t want the money to go to me,” she said, which is why it will go to the two organizations that deal with her diseases.

Right now, Czaikowski has pain every day. “It’s in my back and shoulders mostly,” she said. She added because of the pain, she is sometimes reluctant to hug friends and family members. Sometimes, though, the pain is worth it.

“It’s very hard, because you want that hug,” Czaikowski said.

To donate and for more information on Czaikowski, POTS and RND, visit webmasterrayofhope.wix.com/molly.

Monetary donations may also be made at Wesbanco Bank, 100 Broadway St., Carnegie. Checks should be made payable to “A Ray of Hope.”

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