CARRA Bios

L-R: Delaney, Addison, Charlotte, Ivy

Delaney O’Neill was 5 years old in the fall of 2003 when she was diagnosed with Polyarticular Juvenile Rheumatoid Arthritis. This means that 5 or more of her joints are affected with Arthritis. Specifically, her hips, knees, ankles, fingers, wrists, elbows, shoulders and neck have been the major joints affected.

She started by getting “mystery” sprains in her ankle a little over a year before she was diagnosed. Over the last 6 years, we have been pretty successful in controlling the arthritis with medication. She has occasional flares and we have seen some loss of flexibility and strength over the years, but looking at her, you would never know she has arthritis.

Delaney is a typical 11 year old girl who enjoys running around and playing with her friends!

Addison’s journey with Juvenile Rheumatoid Arthritis began when she was seventeen months old. Out of the blue, Addison developed a profound limp. Over the next month and a half she was put through blood tests, a multitude of doctor’s visits, x-rays and even a bone scan to finally determine that she did in fact have a form of arthritis – Pauci-articular Juvenile Arthritis. As parents we were in shock because we did not even realize that kids could get arthritis. Addison had inflammation in her knees and both ankles. Since the CARRA Costume Ball last year, Addison’s disease has progressed to a more aggressive form – Extended Pauci-Articular Juvenile Arthritis. This simply means that she now has inflammation in more than four joints. She has had more joint injections and now takes a Chemotherapy drug called Methotrexate by weekly injection to help control her disease.

With that being said, Addison is a busy active three year old that seems perfectly happy and healthy. She loves to play with her brother, Connor, and all of the neighborhood kids. At the moment, her biggest excitement is starting preschool this fall.

Juvenile Rheumatoid Arthritis is something that Addison will have to live with for years to come, but with the research that CARRA provides, we can hope that a cure will be found in her lifetime.

Charlotte was diagnosed with Pauci-Juvenile Rheumatoid Arthritis (4 joints) when she turned two in October 2007. She had been limping & woke up one morning with her knee completely swollen, not able to walk at all.

Last November, Charlotte had both knees, an ankle & a wrist drained & given cortisone injections & that allowed mobility for an active 2 year old!

But, for Charlotte, it’s been the uveitis that has been her biggest battle. She was immediately diagnosed with severe bi-lateral uveitis (which is arthritis in the eyes) from the get-go.

Charlotte’s tried many medical options, but together with her pediatric ophthalmologist, her pediatric rheumatologist & a uveitis specialist in Boston, she is finally on a medical cocktail that has her joints & her eyes under control:

  1. Weekly shots given @ home (Methotrexate)
  2. Monthly IV infusions @ the hospital (Remicade)

When Charlotte isn’t at the hospital once a month getting her treatment, she loves wearing a TUTU & pretending to be the mermaid princess Ariel. Charlotte loves to dance & loves to swim. She keeps her two older sisters, Emma & Ellie (& her parents Ryan & Erika) laughing with her 3 year old antics & imagination!

Ivy was diagnosed with JRA not long after her first birthday (almost fourteen months old). When JRA kicked in, she found it difficult to walk in the morning. We also started to notice puffiness on certain joints of her fingers and toes. Once she started taking steroids, it seemed to relieve a lot of the pain. She also went through a joint injection treatment. She no longer takes the steroids, but is on a regular dose of Methotrexate.

There are times when JRA doesn't seem to be affecting her at all, but then there are those moments when we know she's dealing with pain. However, she is doing well, and has a lot of energy. She loves to dance. When we're watching a movie with a dance part, she'll often say, "Dance with me" (as she extends her hand). She loves to play with Mom, Dad, and her brother and sister. It does seem to take her awhile to warm up to people outside of her family. While she is an excellent talker and communicator, I do look forward to when she'll be able to communicate more about how she feels and how JRA is affecting her.

She's a very loving girl. She makes us laugh all the time. We love her sense of humor, and charm. We love our little Ivy!

Photographs :: Lara Blair Images Website :: Black Dog Creative Design