By VASHTI HARRIS
EAST BRUNSWICK — Striving to make the effects of Lyme disease a little less sour, sixth grader and Lyme survivor Helena Blivaiss sold freshly squeezed limeade and homemade bracelets to fundraise for other children who suffer from the disease.
Complete with green decorations and informational posters about her story and fundraiser, Helena, along with the help of her family, set up her first table on March 8 at the Purim Carnival at the East Brunswick Jewish Center.
“Almost two years ago I woke up one day and was in so much pain,” Helena recalled of her initial diagnosis. “The pain moved around from my neck, to my knees, my hips and my head. I went to my pediatrician and she told me I had a virus. Weeks went by and the pain continued to move around my body. One day, it was so bad I couldn’t get out of bed.
“Every movement was so painful. We went to so many doctors to get answers. My pediatrician tested for Lyme disease and it was negative. The doctor was adamant that there was no way it was Lyme and sent us to other top doctors to try to figure this out. This took us months to get in to see doctors while I continued to suffer in pain,” she said.
After seeing an array of doctors diagnosing her with different ailments, from juvenile arthritis to an anxiety disorder, her parents did not agree with any of the doctors’ recommendations and kept thinking that it could be Lyme, according to Helena.
“My mom got in contact with a Lyme organization for doctor referrals. We met with a doctor who specializes in Lyme. During the visit, she reviewed all of my symptoms and said this looked like Lyme. I had all of the symptoms. She shared with us that the Western Blot Lyme Test that is used by most non-Lyme literate doctors is not accurate (the one Helena tested negative for), and she recommended we have another test that is done by IGeneX.
“The test looks for many strains, not just one. It also tests for co-infections which often go along with Lyme disease. The test results came back and it was positive for Lyme disease as well as for the co-infection, bartonella,” Helena said.
After being officially diagnosed, Helena begin treatment on Aug. 15, 2015, with a combination of antibiotics and has been receiving treatment for over a year and a half, she said.
Grateful that her family was able to afford her treatment, Helena recognized that many families cannot afford to continue treatment due to insurance companies not covering long-term treatments for Lyme disease.
“This leaves many people suffering because they can’t afford the care that is required to properly treat Lyme disease. One day we were at my Lyme doctor’s office, and my mom told me about how lucky we are. We can afford to pay for the Lyme care in full, but there are many kids who can’t get care because it is too expensive for families. It was then that I realized that we need to help those kids who can’t get medicine to make them feel better.
“Today, I feel incredible and I know it is because I got the treatment I needed. I can’t imagine having to live in the pain I was in,” Helena said.
All of the proceeds earned at Helena’s limeade table were donated to the Lyme Disease Association’s (LDA) LymeAid 4 Kids fund, which provides paid treatments for people under 21.
“I wanted to find an organization that helped kids. Our Lyme doctor recommended we speak with CEO Pat Smith of the LDA. This is an organization made up of 100 percent volunteers. She said that Pat is amazing and would steer us in the right direction.
“My mom spoke with Pat and together they talked about raising Lyme awareness and funds for children. Pat was very excited that a young Lyme survivor would want to give back in this way. Pat shared with us the LymeAid 4 Kids fund that is a part of the LDA. The author, Amy Tan, joined forces with LDA to start this fund,” Helena said.
Helena said she plans on continuing her campaign to spread awareness about Lyme disease by speaking with her science class at Hammarskjold Middle School about Lyme disease awareness and prevention.
“While Helena was planning her Lyme disease campaign, it was timely to tie this effort in with her bat mitzvah project this year. Although Helena sees this project as a lifetime initiative, Helena is currently focused on bringing this together with her bat mitzvah project to drive community awareness. She started with our East Brunswick Jewish Center community, but would love to be a part of East Brunswick Community Day in the fall to share her resources and knowledge with the entire community,” Helena’s mother Sara said.
Helena hopes to be involved in more events in the future and says if any store will have her, she would love to set up her limeade stand there.
“I hope to do many more events. I don’t have one set up at the moment, but if anyone out there would like me to come to their store I’d love to have my limeade stand,” Helena said.
To donate to the LDA, visit www.lymediseaseassociation.org/donations.
Contact Vashti Harris at email@example.com.