FORESTVILLE - A 7-year-old girl loves Disney princesses and playing on the playground. Once meeting this very energetic little girl, most people would not even be able to realize she suffers from arthritis.
For the second year, Hailey Near of Forestville will be honored at the Arthritis Walk on Saturday in Jamestown sponsored by the Arthritis Foundation.
Hailey was diagnosed with Pauciarticular Juvenile Arthritis and Systemic Onset Juvenile Arthritis when she was a year old.
"She kind of slipped but it was no big deal. The next morning, ... she wouldn't put (her leg) down. We noticed the swelling and my husband said take her to the ER," Tracy Ossman, Hailey's grandmother, said.
Since Hailey's diagnosis, she has been required to take certain medications as well as travel to Cleveland to see doctors at Cleveland Clinic, including doctors at the Cole Eye Institute. Hailey, who is in first-grade at School 5 in Dunkirk, takes Humira, methotrexate and folic acid to help keep her arthritis under control.
"She really is amazing taking her meds. She has been taking them for so long," Ossman said.
The arthritis walk, held at the Audubon Nature Center in Jamestown, was started by Leslie Labarte in 2009. Labarte was at an advocacy summit in Washington, D.C. and met the then director of the local chapter, which covers 21 counties, for the Arthritis Foundation. Labarte brought up the idea of having a walk and received the OK to do the walk in Jamestown. To be honored as local honoree means to celebrate Hailey's personality, Labarte said.
"It highlights Hailey's personal story this year, how she handles her juvenile arthritis with a positive outlook. Basically her enthusiasm and not letting the disease get to her is what (it means) to be an honoree," Labarte said.
Labarte was diagnosed with Juvenile Rheumatoid Arthritis and was diagnosed when she was 3 years old, but has had JRA since she was 18 months old. Labarte recalled Hailey as being a motivator at last year's walk.
"(Hailey) kept telling everyone last year, 'If I can walk this, you can walk this,'" Labarte said. "She had quite the pace going too."
Hailey said she and her family did the longer walk last year, which also offers a shorter route for walkers. By being a local honoree, Hailey received a plaque last year. She also received incentive prizes, a Kindle and a flat screen television, for raising money for her team. The first year the Jamestown walk raised $7,000 and has raised over $40,000 in four years. Labarte has been amazed at the growth of the walk entering its fifth year.
"It's pretty amazing it keeps growing every year. We've been able to let people know there are other people like you in this area. It's bringing people together so they don't feel isolated and alone," Labarte said. "My goal is to let people know that arthritis is not something your grandmother gets."
This is the third year that Hailey and her team, Hailey's Honeys has participated in the walk. The team has four generations walking, including Hailey's great-grandmother and her mother, Michelle. The first year, Ossman said, the team wanted to raise money for awareness.
"We felt so bad. How are they ever going to find a cure if they aren't going to raise any money. That's when we started doing what we're doing," Ossman said. "The very first year just between friends and family sponsoring her to walk, it was $1,200 (raised). She was the gold star on the wall for the most (fundraising)."
Hailey's mother, Michelle Ossman, was recently diagnosed with the condition as well. She and her daughter are both on medications.
"I'm on (the same medicine) just like she is," Michelle said. "We're on the same exact dose of Humira. We take them together. I just got my first dose two weeks ago, I was nervous. (Hailey) said 'Mommy, it will be OK. I'll go first and show you how you have to be brave.' It was the best she has done it. I did mine and she held my hand."
Hailey even said her mother squeezed her hand a bit when she was holding it while she took her first shot. Both Michelle and Hailey said the dose of Humira is not pleasant. Michelle described it as a tetanus shot but 1,000 times worse and Hailey said it "burns like hot fire going in."
Michelle was diagnosed with Psoriatic Arthritis after having problems with her wrist. Blood tests determined Michelle's anti-nuclear antibodies were positive and doctors started her on the medication. Since Michelle is currently taking the same medicine as Hailey, she has said she is more understanding of what her daughter is going through with her arthritis. Labarte described dealing with arthritis like wearing a "lead coat."
"It's not just an ache and pain here. We wake up every morning and feels like you are wearing a lead coat constantly because your body just weighs so much on you. There's just pain everywhere," Labarte said.
Last year, the Hailey's Honeys team had a benefit and gave a donation of almost $9,000 to the Arthritis Foundation. The team this year has set a goal to raise $13,000. The benefit this year will be held on June 30 from 1 to 7 p.m. at the Firemen's Exempts on Central Avenue, Dunkirk. Tickets are $10 and include a pig roast dinner from 1 to 4 p.m., raffles, a 50/50 drawing and a silent auction. Raffles include a gas grill package, a sport fishing charter donated by KONGO Sportfishing Charters, tickets to a Justin Bieber concert July 15 in Buffalo, among others. Music will be provided Hooman, Sean Patrick McGraw, Noble Hearts and DJ Joe Gould. There will be a bounce house and face painting for children. Tickets can be purchased at the Firemen's Exempts and will be available at the door.
Over the past two years, more than $10,000 has been raised for the Arthritis Foundation. Ossman was thrilled about the generosity of the community who attended last year's benefit.
"Family, friends and the community that have helped us. Without everybody together, it wouldn't work. We were just overwhelmed last year with the people that showed up. We thought maybe we could get a couple more thousand dollars," Ossman said.
While there is no cure for arthritis, all money raised goes to the Arthritis Foundation to work towards a cure. Michelle said recent research has determined that the cause of arthritis may be related to genetics and environmental factors. To donate to Hailey or her team, log on to www.walkjamestownny.kintera.org. Donations can be given under "Hailey Near" or "Hailey's Honeys" under the donate tab.
"People can say a lot about Dunkirk and Fredonia, how awful the area is, how bad the economy is but whenever there is someone in need ... they always seem to step up with open arms," Michelle said. "It's just something about the area, they are always willing to help."