By Keysha Drexel
Not long after she moved to Mountain Brook in 2003, Blair Newman read an article that sent her knocking on the door of the Arthritis Foundation and eventually led to the founding of a fundraising event that is celebrating its 10th anniversary this year.
Newman, who now lives in Guntersville, was one of the founding members of the Mudbugs and Music fundraiser for the Arthritis Foundation. The event started in 2004 and was spawned by the 34-year-old’s desire to raise awareness for all the children suffering with arthritis–like the girl in the article.
“I read this article about a little girl who attended an Arthritis Foundation summer camp, and in the article, the girl’s mother mentioned walking into her daughter’s room to find her ‘sawing’ at her legs with a comb, wishing to cut them off because they hurt so badly,” Newman said. “I immediately identified with the little girl because I felt like that so many times throughout my life.”
Newman said after she read the article, she immediately went to find the offices of the Alabama chapter of the Arthritis Foundation.
“I knocked on the door and told them I would volunteer to do anything that I could to help what they were trying to do,” she said.
The article made Newman remember what it was like growing up with rheumatoid arthritis, a chronic inflammatory disorder that affects the lining of the joints and causes painful swelling that can eventually result in bone erosion and joint deformity.
“I was diagnosed when I was 2 and saw an adult rheumatologist in Birmingham because at that time, there were no pediatric rheumatologists in this area. We drove from Jasper, where I grew up, to see the doctor,” she said.
But getting the doctors to diagnose the toddler-aged Newman was a challenge, she said.
“My mother was a physical therapist and she knew immediately what was going on, but when she brought me to the hospital, they argued with her and tested me for everything else under the sun,” she said. “But my mother didn’t accept that it wasn’t arthritis, and she fought for me until they figured out she was right. I was fortunate because even now, children can go years without being properly diagnosed.”
And with rheumatoid arthritis, a delay in a proper diagnosis can be devastating, Newman said.
“I don’t think people understand that this is not just an old person’s disease, and when arthritis attacks a young body, it can do a lot of damage quickly, especially when you start talking about bone erosion,” she said.
Newman slept in braces that covered her legs from hip to ankle just to keep them straight, but the arthritis damaged her elbow so much that today it is permanently bent.
“I am 34 years old, and I already need an elbow replacement and two knee replacements,” she said.
Even though her mother explained arthritis to her, Newman said it was hard to understand why she hurt so much as a child.
“I took so many children’s aspirins growing up just so I could stand to walk around,” she said. “Being in pain turned me into kind of an introverted child.”
Every morning before school, Newman’s mother would wake her at 5 a.m. to soak in a hot bath.
“I was so stiff and in so much pain, we’d do the hot baths and then walk around the neighborhood just so I could get to the point where I could make it through the school day,” she said.
Newman said her own struggles with arthritis inspired her to throw herself into her volunteer work at the Arthritis Foundation. In January 2004, she became an employee of the Foundation.
As part of her duties, Newman had to come up with fundraising ideas to raise money and awareness.
“Ten years ago, my husband, John, and I were sitting around with our friend Michael Gee, owner of The Pants Store, talking about the lack of treatment for children with arthritis,” Newman said. “The three of us decided to form a junior board to help raise money for kids with arthritis, but we had no idea how major (that idea) would turn out to be.”
The trio came up with the idea of hosting a crawfish boil to raise money. Their friend Jason Martin came up with the Mudbugs and Music event name and logo.
“We asked friends and acquaintances to join the board,” Newman said. “Everyone worked so hard that year, and we created an event from scratch. The first year, we raised about $2,500.”
In 2011, when Newman and her family relocated to Guntersville for her husband’s job, Mudbugs and Music raised more than $150,000.
“That money is used to fund research and local programs for people with arthritis and not just rheumatoid arthritis–there are over 100 forms of arthritis,” Newman said.
Mudbugs and Music also raises money for the Arthritis Foundation’s Juvenile Arthritis Initiative, Newman said.
“The Alabama Juvenile Arthritis Initiative raised approximately $2 million to establish a pediatric rheumatology clinic at UAB,” Newman said. “Prior to the establishment of this clinic, there were no pediatric rheumatologists in Alabama. The clinic now serves children from all over the Southeast, and with the addition of four doctors, it has become the largest pediatric rheumatology clinic in the region.”
By working to help the Foundation’s Juvenile Arthritis Initiative, Newman knew she was helping many children receive the treatments they needed. But she said she never really imagined the program would also one day help her own children.
The Pediatric Rheumatology Clinic was established in September 2007. Newman’s son, George, was born that October.
While she was pregnant with George, Newman said, she worried that he might also have arthritis but said doctors assured her it was unlikely. But when her son started walking, she began to notice telltale signs of the disease.
Newman noticed that George was dragging his leg one day and picked up her video camera to document it.
“I knew I had to be an advocate for my child and show the doctors exactly what was going on with him,” Newman said. “I didn’t want my worries to be dismissed.”
When George was 18 months old, he was diagnosed with juvenile rheumatoid arthritis and became a patient at the pediatric arthritis clinic that opened the month before he was born.
“I cannot describe the feelings I felt when my son was being seen by a pediatric rheumatologist–something that would not have happened a year before and something that my husband and I made happen,” Newman said.
Newman said she felt so lucky that her son was able to be seen at the clinic so quickly.
“I could have never imagined that we would personally benefit from (the clinic),” she said. “That type of fundraising is very time consuming, emotionally taxing, and it can be frustrating at times. It was surreal, in my opinion, (and) it was a sign from God that all of our hard work was worth it.”
That feeling was only heightened for the family after George’s little sister, May, was born five years ago.
“I thought there was no way that May would have it, too, but May’s is actually worse than George’s,” Newman said.
Newman brings both of her children to the pediatric arthritis clinic often for treatments and said she’s seeing the other side of what her mother must have gone through with her.
“Now my children scream and cry about their weekly injections and they ask me, ‘Why, why did God do this?’ and I just tell them that everyone has their issues and that we are really blessed because we have medicines to take and good doctors,” Newman said.
Newman said thanks to the money raised through Mudbugs and Music, her children and others are getting access to medications and treatments that can save them from some of the pain she experienced as a child.
“It’s not just a disease that hurts your body, arthritis hurts you emotionally, too,” Newman said. “I can still remember people–even adults–making fun of me and how I walked when I was a child, and that is something that I hope my children and other children with arthritis never have to feel.”
Newman said she hopes Mudbugs and Music will continue to be successful at not only raising money for the Arthritis Foundation but also at raising awareness about arthritis.
“My ultimate hope is that we can find a cure and that all of this will be a distant memwory,” she said.
Newman and her children are the honorees for this year’s Music and Mudbugs fundraiser, which will be held May 10 from 1-6 p.m. at Good People Brewing Company in Birmingham.
The event will feature live music including headliners The Banditos, a silent auction and children’s activities.
Tickets are $25, and children 12 and younger get in free. Those 21 and older will receive a complimentary beer from Good People Brewing Company with their ticket purchase.
Mudbugs and Music tickets are available at the door and online at www.mudbugsandmusic.com.