Daria - 2010
Daria was diagnosed with PauciArticular Juvenile Idiopathic Arthritis in December 2006 at the age of 9. She was an avid soccer player in her 5th season, and had been complaining of knee pain for months. I thought she had twisted her knee playing and assumed it would get better after the season was over. About a month after it ended she was unable to get out of bed. This is when I knew it wasn’t *just* a twisted knee.
Over the next 3 days we saw our doctor and also followed up with our referral to Children’s Hospital in Seattle. I now know how lucky we were to be seen so quickly. The arthritis began in her left knee in 2006 and in January of 2009 we learned that it has spread to her left jaw, her other knee and also her hip. In March of 2009, Daria had joint injections in both knees, her left hip and her left jaw to attempt to arrest the progression. There have been several medication changes and no more soccer, but it seems that the arthritis is controlled for now.
Daria has never complained about having arthritis. She is also very slow to mention her pain (but that’s another story). She is so strong and positive about her diagnosis and quick to encourage others in their challenging situations. She has always been a compassionate person and I believe because of this challenge in her young life, she has been given an extra dose of compassion and empathy.
Daria is now thirteen years old, plays in band, is a member of the National Honor Society, is able to swim, and is active in Girl Scouts. For her Bronze Award in scouts, she created a project to benefit Seattle Children’s Hospital. In her many visits to the hospital, she realized she could help the other patients by collecting donations of crayons and activity books. She went before groups of people asking for donations of these items. She then scheduled an appointment with one of the playroom coordinators and delivered the items collected.
Please join Daria in supporting the Arthritis Foundation through participation and fundraising for this year’s Jingle Bell Run/Walk!
Karen - 2010
Karen Holt Harbin has courageously and graciously dealt with Juvenile Rheumatoid Arthritis since she was two, although she was not diagnosed until she was eight. This inspirational 48-year-old has fought serious pain and deterioration of her joints throughout her life, and she has had numerous surgeries to combat the viciousness of this disease, her first at the age of twelve. Since that time the disease has progressed to the point where multiple operations had to be performed to correct terribly disfigured hands and feet, as well as bilateral knee replacements. Karen is a gracious, generous, loving woman who has suffered through the pain and constant disruptions to her life with quiet dignity and grace that would make even the strongest person give up. Instead she bounces back while routinely experiencing pain on a level that can hardly be imagined, and the evidence of her courage and can-do spirit is overwhelming.
Karen possesses an amazing ability to cope with the disappointment of failed surgeries. Instead of letting this disfiguring disease get the best of her she soldiers on, volunteering her time for several causes including acting as a camp counselor for children afflicted with juvenile rheumatoid arthritis.
Karen has not been able to participate in many physical activities due to the crippling nature of RA. Two years ago she decided to go back to her childhood passion of bike riding, doing her best to disregard the pain. Her quiet perseverance lead to the formation of a family Danskin Triathlon Relay Team in both Arizona and Seattle. Karen completed the biking portion through sheer determination and grit. She required another foot surgery this past December, a complete ankle fusion, but is now back to focusing on training to be ready for another triathlon relay in August.
She has tried every experimental drug that has come along and dealt with all of the side effects with considerable optimism. These new medications would not be available without the Arthritis Foundation fundraising events like the Jingle Bell Run/ Walk.
Karen struggles with daily complications, yet is humble in her inspiration to her entire family and everyone she knows.
Meaghan - 2010
My name is Meaghan Victory, I am 14 years old and I have Juvenile Rheumatoid Arthritis (JRA). Since being diagnosed in the spring of 2007, I have learned to cope with the daily struggles that affect millions of people and children with arthritis. At first my arthritis was just in my right wrist, but it has now spread to many joints throughout my body. What started out as only having to take a couple of pills a day has ballooned into a regimen of 10 – 15 pills a day, a weekly injection and a monthly infusion. Even with this my arthritis continues to spread throughout my body. I was told by a hand surgeon this spring that within the next five years I will need to have my wrist and hand fused together to minimize the pain I feel. While this will help me with my pain it will also permanently change a lot of things. It will limit the mobility in my wrist, effecting simple daily tasks. The arthritis has done so much damage because my body has not positively responded to the currently available medicines. I’m only 14, and have endured more pain than any child should.
I am honored to be a 2010 Seattle Jingle Bell Run/Walk honoree. I want to be an advocate for myself and for the millions of people who suffer every day. As this disease has spread inside me, I have become more determined to beat it. I continue to be active and to educate myself as I try to live as a normal teenager, even though there are days that don’t allow me to be a 14 year old. From making up missed school assignments due to doctor appointments and hospital visits, to playing basketball, lacrosse and running track, I try to be involved as much as possible. Now as I enter high school, my goal is to be involved with the Arthritis Foundation as much as I can so that other kids won’t have to go through what millions of people already have.
I know that I can fight this and I know together we can all make a difference.
Please join "Team Victory" and help us in any way you can!
Nadina - 2010
I was diagnosed with Juvenile Rheumatoid Arthritis when I was 13 years old. I thought everything was over for me, but in retrospect I feel like arthritis has helped me become the person I am today. My JRA has obviously had a large impact on the course my life has followed. Before I was diagnosed I played basketball and I became proficient in American Sign Language. After I was diagnosed many things changed for me, but as I look back now, I am truly appreciative of the cards I was dealt. I strongly believe in the phrase what does not kill you, will make you stronger. With the arthritis things were hard for me; I stopped playing basketball because of the pain. I would wake up in the morning stiff and hardly able to walk. It was like I was an old person. I took a lot of medications that had horrible affects on my body. I gained weight because I couldn’t be as active. I went to a child psychologist who helped me understand some of the things I was dealing with. I decided not to be a victim. I joined the golf team at my high school and continued with sign language despite the constant pain I was in, as it was one of my passions. I couldn’t do it as much but my amazing doctor at Children’s, Dr. Carol Wallace, knew my passion and helped me deal with the pain and the disease. If it wasn’t for Children’s and their team of specialists I don’t think I would have made it through as successfully as I have.
I started college in 2006 and I became a member of Alpha Omicron Pi. Every year, my organization did a teeter-totter-a-thon in which we teeter-totter for 24 hours to raise money for the Arthritis Foundation. We also participated in other events supporting the Arthritis Foundation, including Arthritis Walks and the Spokane Jingle Bell Run/Walk. It is funny to me that during these events I forgot that I have arthritis, I was happy to be contributing to the search for a cure. It is so important for the younger children to be helped so they can avoid the pain and frustration that has plagued me.
I hope I can provide inspiration for those suffering from Arthritis and for those who want to support the Arthritis foundation. Being an AOII, I hope other fraternal members will feel a bit of a connection because of the sisterhood/brotherhood and my direct connection with this disease. I love the idea of helping and encouraging those who feel a passion for arthritis research and providing inspiration to those who are having a hard time coming to terms with what life has dealt them. A Quote that has provided me with inspiration is, “The best way to prepare for life is to begin to live.” Elbert Hubbard.
Synnove - 2010
On June 16, 2006, Synnove was diagnosed with Polyarticular Rheumatoid Arthritis. Polyarticular means ‘many joints’, and is the type most like Adult RA. Synnove had 29 joints affected at 6 years of age; who knew kids could get arthritis? We are lucky though, we have Seattle Children’s Hospital nearby and several Pediatric Rheumatologists on hand. There are only 217 Pediatric Rheumatologists in the country to serve over 300,000 children affected by arthritis and Rheumatic disorders.
Synnove has been on many medications on her journey toward remission, Methotrexate (a chemotherapy drug), Enbrel (A biologic drug), Prednisone, and steroid joint injections in 19 joints. She is not in remission yet, but lately she has been “under control”. Yeah! Synnove has a great spirit and determination to not let her arthritis stop her from doing the things she enjoys, soccer, basketball, Girl Scouts, and jumping on the trampoline with her many friends. Her arthritis doesn’t define who she is; it is just a part of her life. Please join us on our team ‘Synnove’s Sprinters” and help us Run/Walk for a cure at the 26th Annual Jingle Bell Run/Walk!