SIDNEY — Jingle bells will be ringing for a Sidney girl.
Anna Neu, 6, daughter of Emily and Justin Neu, is the youth honoree for the Arthritis Foundation’s Jingle Bell Run/Walk in Columbus on Saturday, Dec. 5, in downtown Columbus. Anna is the youngest person to be diagnosed with Ankylosing Spondylitis, which is a form of arthritis that primarily affects the spine, but other joints can also become involved.
“Anna started complaining of ‘bugs biting’ her back and waking up screaming in the middle of the night when she was just 2 ½ years old,” said her mother, Emily Neu. “She would stop and sit when the family was out for a walk around the block and say ‘I have no more runs left’ or ‘my engine ran out.’”
Anna was diagnosed by Dr. Stacy Ardoin with Ankylosing Spondylitis. Anna is also being seen and followed by doctors at the National Institute of Health in Bethesda, Maryland, and has to travel to Bethesda every six months for tests and specialist appointments.
“The doctors at NIH have confirmed Anna’s diagnosis and that she is the youngest person they have seen with Ankylosing Spondylitis,” said Neu.
Anna receives regular monthly infusions at Nationwide Children’s Hospital and has had failed attempts of most medications known to help with Ankylosing Spondylitis. Her arthritis mostly affects her lower back and spine, but has also caused inflammation at times in her hips, knees, ankles and toes. Research and hope for new medications are what keep Anna and her family going.
When asked why events like this are so important to the Neu family, Anna’s mom said, “Fundraising for Anna’s Angels is a way to do something to help Anna that is somewhat within our control. When you have medication after medication not do what the doctors have hoped it would do, it gets discouraging. You have no control over the disease or how her body will respond to the medication. Knowing we are raising funds that further research, either for the Arthritis Foundation or funds that allow us to travel to NIH twice a year, gives us hope and helps us feel like we are doing all we can for Anna.”
Anna has been on television building awareness for her team, “Anna’s Angels.” She won a scholarship for her and her family to attend the Juvenile Arthritis Conference this past July in Orlando, Florida.
A student at Holy Angels School, Anna always wears a smile, said her mom. She likes to play with her siblings (she has five of them, Allison, 20, Ethan, 17, JT, 3, Kenny, 8, and Mena, 4), paint her nails, dress up and play jokes on people.
“Her laugh is infectious. Her smile melts hearts. She is quick to give a hug. Her disease is invisible to most and we are hoping research can find a medication to make her disease and pain invisible to Anna too!” said Emily.
Two fundraising events are being planned by Anna’s Angels, said Emily.
“A friend of Anna’s Angels, Linda Edwards, reached out to local restaurants to help raise funds for Anna’s Angels,” said Neu. “Applebee’s in Sidney is holding a Flapjack Fundraiser on Nov. 7, 2015, from 8 to 10 a.m. at the Applebee’s location in Sidney, Ohio.”
Tickets will be available at the door and cost $7 per person for all you can eat pancakes, bacon and beverages (coffee, tea, soda). For every ticket sold, $4 will go to the Anna’s Angels Fund which was started by one of Anna’s Angels to help the family pay for medical and travel expenses.
Applebee’s will also be holding a fundraiser on Nov. 15 from 11 a.m. to close for Anna’s Angels during which time, 10 percent of receipts collected will go to support Anna’s Angels Jingle Bell Run team.
“Our family would like to thank everyone in the community for their outreach and support,” said Emily. “Currently, Anna’s Angels is the top fundraising team for the Jingle Bell Run/Walk in December.”
To make a donation to the Jingle Bell Run/Walk in Anna’s name, go tohttp://www.jbr.org/faf/home/default.asp?ievent=1139281 and click on Anna’s Angels. The team has raised more than $6,000 of their $10,000 goal thus far.
Reach the writer at 937-538-4822; follow her on Twitter @MelSpeicherSDN. Follow the SDN on Facebook, www.facebook.com/SidneyDailyNews.