West Hartford's Teddy Monnes is 2011 Arthritis Walk Ambassador

I remember first seeing Teddy Monnes several years ago, when he was a smiley kindergartener always dressed in some sort of soccer attire. My son has played on soccer teams with both his brother Jack Monnes and his cousin Chris Monnes, and Teddy was often a fixture on the sidelines, kicking the ball around, anxious for halftime when he could run out onto the field and shoot at the goal.

Even as a 5-year-old, Teddy was already a skilled soccer player, following in the footsteps of his talented older brother and cousin. (His dad, John Monnes, and his uncle, Jeff Monnes, are also well known to many in West Hartford’s soccer community.) It was definitely not obvious, and I had no idea until very recently that Teddy had been diagnosed with juvenile rheumatoid arthritis when he was 4, and that he continues to play competitive soccer despite some very serious joint and eye problems caused by his arthritis.

This year, Teddy, who is now 9 years old, will serve as ambassador for the 2011 Greater Hartford Arthritis Walk, which will take place on Saturday, May 7, at . Although the national organization chooses both an adult and child as honorees each year, Teddy is the very first ambassador of the Greater Hartford Arthritis Walk.

“Teddy and his family have been very involved with the Arthritis Foundation for several years, and he’s a great representation of the story we are trying to tell,” said Luellen Perkins who serves as the Arthritis Foundation’s regional walk director for Connecticut.

“People don’t realize that arthritis is the second most common childhood disease after asthma,” said Perkins, who added that most people also don’t realize the extensive treatments these kids must endure – much more than suffering through a few aches and pains. Arthritis is a disease most often – but certainly not exclusively – associated with the elderly. It afflicts more than 46 million people in the United States, and approximately 300,000 children under age 18 have been diagnosed according to the Arthritis Foundation.

As ambassador, Teddy has been very vocal telling his story and has been working diligently to increase awareness about arthritis as well as to raise funds for the Arthritis Foundation. Teddy’s goal is to raise $5,000 this year, and with just under two weeks to go, “Team Titanium Ted’s” is currently ranked first in fundraising for the Greater Hartford Arthritis Walk.

Teddy’s mom, Kris Monnes, is very optimistic that Teddy will meet his fundraising goal this year. Part of the reason is the tremendous outpouring of support he has gotten from his school. “is going to hold an all school rally to inform kids about arthritis and to try and get everyone to come out and support ‘Titanium Ted’s,’” Kris told me. The rally is scheduled for Wednesday, April 27, and Kris said that Morley’s PTO will purchase the bright green “Titanium Ted’s” T-shirts for anyone who comes out and supports Teddy in the Arthritis Walk.

Kris said that many of the family’s friends were surprised when she sent out the fundraising letter this year announcing that Teddy was an ambassador. They had no idea that Teddy had arthritis. “He doesn’t complain; [my husband] John calls him the strong, silent type,” Kris said. Even though Teddy has had some recent setbacks and is having some strong side effects from his current medication, Kris said that he doesn’t whine about it. “He probably doesn’t even know what it feels like to be normal,”  Kris said.

“Right now Teddy’s joints are good, but his eyes have been a problem,” Kris told me. He recently had eye surgery to treat Uveitis – a form of arthritis that affects vision. Although the surgery was fairly successful, Teddy has suffered some significant side effects.

But Teddy’s positive attitude has not wavered, and he seems to take everything in stride. In his letter to family and friends asking for support, Teddy wrote:

“When going back for another check up, the doctor noticed the pressure in my eyes was extremely high and I now have glaucoma. This can be treated with eye drops. So my lucky mom and dad get to hold me down three times a day and put them in. The other side effect I have is my lens became blurry and gave me trouble with my vision. Because of this, about three weeks ago I got my first pair of eye glasses to help me see better. They are very cool!!! The Arencia [arthritis medication] is continuing to cause me more skin problems. We are now waiting to see what the next step is. I have tried a lot of different arthritis medicines and need the Arthritis Foundation to keep researching to find new medicines and a cure so I will feel better.”

For more information about supporting “Titanium Ted’s,” contact Kris Monnes at monnes@aol.com. Details about the Greater Hartford Arthritis Walk can also be found at www.greaterhartfordaw.kintera.org, which also includes a link to the “Titanium Ted’s” team page.