Darien Family Makes Strides In Girl's Fight Against Arthritis

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The Edgar family of Darien will participate in the Jingle Bell Run/Walk For Arthritis on Saturday in Purchase, N.Y. Erin Edgar, 11, was diagnosed with arthritis in June. Photo Credit: Contributed

DARIEN, Conn. – Until this spring, Erin Edgar of Darien danced, took karate lessons and enjoyed the typical activities of an 11-year-old girl. But doctors diagnosed her with arthritis in June, and the young girl and her family have been fighting back ever since.

Erin will join her family, including her mother Dawn and father Pat, in Saturday’s Jingle Bell Run/Walk for Arthritis in Purchase, N.Y. The family has created a 38-member team, “Erin’s Elves,” and has raised more than $8,000 to fight arthritis. Race proceeds benefit the Arthritis Foundation. Race day registration begins at 8:30 a.m. at Purchase College, and the run begins at 10 a.m.

Dawn said Erin started complaining in March about pain in her joints. “We really didn’t know what was happening,’’ Dawn said. “We said she’ll have to have blood work done, but Erin’s not big on needles. It finally was hurting enough that she agreed to have the blood tests done.”

Erin fought pain in her lower joints and swelling in her hands and knees. An older sibling had some minor arthritis pain as a teenager, but nothing like this. “Erin’s numbers were different,’’ Dawn said. “A lot of her numbers were much more definitive. They screamed arthritis. There was a time she couldn’t even walk down the stairs.”

Erin has been taking medication, but there are still significant challenges. She lost 11 pounds in September and is in frequent pain. “After Christmas, we’ll try another medicine and hopefully get her to a level to do the activities that she wants to do,’’ her mother said. “We’re trying to find the right mix of medicine where she can live her life as close to normal and she’s not inhibited. Sometimes they even outgrow it. I wish it would go away sooner rather than later.”

The Edgars have drawn on the support of family and friends to help them cope. In Saturday’s event, Erin’s Elves has raised more than twice as much for the cause than second-leading team. They also have the largest team in the event. Readers can support the team by making a donation through the team's online fundraising page.

“Erin's story has affected many people. There are adults with arthritis and when they think of Erin enduring the same pain that they endure, they are very sympathetic,'' Dawn said. "I know an adult who takes the same Enbrel shots and understands how painful the shot is and then for a child to have to take it really says something about what Erin is going through.  

"Many adults in the community have seen Erin and how much she has changed since she was first diagnosed in June.  Everyone is very supportive. And when you know it is a child, it hits much closer to home. Many people count there blessings that their children are healthy.”

Pat’s co-workers at KPMG have supported the cause. He also has seven siblings, most of whom will be at the event on Saturday. Erin’s siblings – Sean, Kelsey and Kailin – have also been supportive of their sister. Kailin is hoping to start an arthritis fundraiser next year at her college, Penn State.

Dawn said teachers and Middlesex Middle School administration have been supportive and have made several accommodations for Erin to make it easier for attend school and keep up with her school work.

“The past six months have been very emotional,’’ Dawn said. “There have been so many days in the past few months where my husband and I thought it’s just been so painful to watch her go through it. We’re trying to help her along and be supportive. We’re happy she’s stabilized. We’re just so thankful for all of the support we’ve had.”

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Nantolino:

I was very sad to hear about the significant joint pain she has been enduring. I am wondering if you had ever checked her for Lyme disease? Chronic Lyme mimics many disorders including arthritis, fibromyalgia and one classic symptom is debilitating joint pain and swelling. The standard tests are not great but there is a lab Igenex that has a more comprehensive/ higher sensitivity test. Many physicians do not believe in chronic Lyme but I have had it in diagnosed for 13 years and am finally being treated. Go to the documentary on utube: under our skin. To learn more. Or feel free to write me back at nantolino@aol.com

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