Molly's Ray of Hope...
Raising RND & Dysautonomia awareness
'Molly's A Ray of Hope' is all about raising amplified pain awareness. Together, we hope to offer children (and parents) support, information, choices, and hope.
Our NERVEmber 2013 fundraiser! Save the date!!!
T-shirts will be sale at our November 2013 Fundraiser
We don't have many, but we will have 'Fighting to end the pain' t-shirts on sale at the Molly's Ray of Hope awareness event. Please make sure to pick some up. We will post the cost as soon as we have a final price!
WOW! Carnegie, Scott, and Collier all amplify support by approving proclamation!!!
Second Page will be uploaded soon
Event raises funds and awareness for painful disease
BY DEANA CARPENTER
FOR THE ALMANAC
published nov 29, 2013 at 4:06 pm (updated nov 29, 2013 at 4:06 pm)
Photo by Deana Carpenter Molly Czaikowski and her friend Katy Haller, who also suffers from RND.
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.”
Pittsburgh Post Gazette
Fundraiser set to help Carnegie teen
November 21, 2013 4:08 PM
Renea Holden of Carnegie is on a mission — find a cure for reflex neuromuscular dystrophy, a debilitating but little-known illness that has afflicted her 17-year-old daughter, Molly, for three years.
As part of the mission, she has organized a fundraising event, Molly’s Ray of Hope, at 10 a.m. Saturday) at the Carnegie Presbyterian Church, 219 Ewing Road in Collier.
“To look at her, one would never know the agony she is in," Mrs. Holden said. "She looks perfectly normal, and yet there are some days she can’t even get out of bed.”
Among the other typical symptoms are swelling of the extremities, nausea, dizziness, poor circulation and numbness.
Those who suffer from the disorder also feel acute pain when they are touched. Complicating Molly’s situation is that she also has Dysautonomia, a nervous system malfunction that leaves her feeling dizzy and faint.
Often, RND is triggered by an injury. In Molly’s case, it was a bee sting.
Luckily for victims of both these ailments, Pittsburgh has a place where families can turn for help.
“The Children’s Institute offers an intense physical therapy program. It is one of only five in the nation. Kids are waiting from all over the country to come here in hopes of finding a way to function in spite of this debilitating disease,” says Mrs. Holden.
To support the hospital and additional research of these two illnesses, Mrs. Holden's fundraising program will feature Jonathan Pletcher, clinical director of the Adolescent Medicine Division at UPMC and an assistant professor at the University of Pittsburgh School of Medicine, who will discuss both of these ailments. Molly will speak, too.
Besides a continental breakfast, the event will offer an auction and bake sale, as well as the sale of awareness bracelets and keychains. Among the auction items will be tickets to a Penguins’ game and the Byham Theater, Civic Light Opera's production of “A Christmas Carol”, passes to the Carnegie Science Center and Children’s Museum, as well as gift certificates from the Carnegie Coffee Co. and Ciao’s.
To promote the fundraiser, Mrs. Holden within the last month asked Carnegie Council and the Collier and Scott commissioners to issue proclamations recognizing November as RND Awareness Month. All three boards did so unanimously. Next year she plans to add the city and the state to the list.
“I am determined to spread the word, gain community support and help find a cure, Mrs. Holden said.
Information: 412-276-4640 or http://webmasterrayofhope.wix.com/molly
Read more: http://www.post-gazette.com/local/west/2013/11/21/Fundraiser-set-to-help-Carnegie-teen.print#ixzz2mZsYTO19
Molly's Ray of Hope NERVEmber Event press release
Local Allegheny County Communities Acknowledge Amplify Pain Awareness Month with Proclamations,
While One Mother of a Child-Who-Cannot-be-Touched Leads the Charge with a
Reflex Neurovascular Dystrophy (RND) & Dysautonomia Fundraiser.
One local fundraising mother rallied behind her daughter’s disease, successfully asking community officials to issue proclamations supporting November as RND awareness month.
This month, Carnegie resident Renea Holden presented proclamations to the Borough of Carnegie, Scott and Collier Townships. Officials approved it unanimously. “Next year I hope to add the City of Pittsburgh--and the State of Pennsylvania--to the list,” Holden said with affirmation. “I am determined to spread the word, gain community support, and help find a cure. Not to mention, because of Pittsburgh’s unique connection to RND, I think we should be leading the battle to conquer such a terrible disease.”
RND is a debilitating amplified pain condition that afflicts children and teenagers. Often undiagnosed (or misdiagnosed) for months (or years), sufferers have even been accused of making it up in their heads. Other symptoms include swelling of extremities, nausea, dizziness, poor circulation, inability to be touched, numbness, and the list goes on. (Learn more: http://www.chp.edu/CHP/reflex+neurovascular+dystrophy).
This condition affects the sympathetic nervous system. The brain and nerves do not communicate properly, therefore, amplifying pain. There is no cure, nor can medicines alleviate the suffering. Children are left with no options for relief, except possibly a six-to-eight-hours-a-day intense physical therapy program. (Learn more: http://www.amazingkids.org/childrensinstitute/userfiles/file/RND%20FAQ(1).pdf) According to the McGill Pain Scale, the affliction hurts more than childbirth. With 50 being the worst, RND rates as a 42. In comparison to other chronic conditions, it is ranked the most painful.
“Luckily, there is a one amazing hospital in Pittsburgh that helps kids learn to function in spite of the pain,” stated Holden. The Children’s Institute offers an intense physical therapy program. It is one of only five in the nation. “Kids are waiting from all over the country to come here--in hopes of finding a way to function in spite of this debilitating disease. That is the city’s unique connection to RND.”
Holden’s daughter, Molly Czaikowski, has been living with this nightmare for over 3 years. “To look at her, one would never know the agony she is in. She looks perfectly normal, and yet there are some days she can’t even get out of bed,” explained her mother. “She suffers silently with this invisible disease.” Holden cannot even hug her child because the pain is so acute. “Do you have any idea what it is like to know that you cannot touch your child? It is heartbreaking! I even watched her condition reduce her to a wheelchair!” In 2012, Molly learned to walk again at the Children’s Institute due to the severity of her condition.
This one-woman-band is determined to make a difference. “Both my daughter and I are typically very private people; however, in this case, we know how important it is that we speak out and tell her story,” said Holden firmly. In addition to increasing public awareness, she has started the ‘A Ray of Hope’ fundraising campaign. “Our first event is Saturday, November 23rd at the Carnegie Presbyterian Church at 10 AM,” Holden explained. “My daughter will be speaking. Also, Dr. Jonathan Pletcher (Clinical Director of the Division of Adolescent Medicine at Children's Hospital, and Assistant Professor at the University of Pittsburgh) will be explaining RND in more detail.”
As if Molly hasn’t suffered enough, she was also diagnosed with Dysautonomia. Her autonomic nervous system malfunctions, leaving the teenager dizzy and ready to faint. She is intolerant to temperature and motion changes. “Molly also has difficulty breathing. It can be very frightening,” stated Holden. “Dr. Pletcher will be explaining more about this condition as well. Finally, we are hoping to have a member from each of the participating municipalities in attendance. I am thrilled to confirm that we do have a representative of the Children's Institute attending.”
In addition to featuring speakers, Holden has secured donations and will be holding a Chinese auction. “Some of the exciting items up for grabs are autographed CD’s signed by BE Taylor; Tickets to the Byham Theater, CLO's production of ‘A Christmas Carol,’ and a Pens game; passes to the Carnegie Science Center and the Children's Museum; and Gift Certificates from the Carnegie Coffee Company and Ciao Restaurant. We will also have various themed gift baskets. Net proceeds from the fundraiser will be split between The Children's Institute of Pittsburgh and Dysautonomia International,” explained Holden.
Since Holden has begun her quest for awareness, she has met other parents whose children suffer from RND. “We all feel so isolated, and our children misunderstood. I think it is fair to say all of us want people to understand what a terrible disease this is. More importantly, we want a cure. It’s time.”
