Introducing our 2009 Jingle Bell Run Honoree! Maddie Genest: A 9-Year-Old Living Well with Arthritis! – Ashley Boynes, Community Development Director, WPA Chapter
“For three days in a row, she could barely make it down the steps of our 2-story home. As I watched her come down the stairs, she was hunched over, and I thought, ‘She looks like an 80-year-old arthritic woman! She was taking one step at a time, moving slowly, and dragging her feet. Then, she didn’t have the strength to button up her pants, and her hands looked bent. This is when I knew something was wrong.”
It turns out that Mrs. Genest’s instincts were correct. There was, in fact, something wrong with her child. What started in November of 2008 as her daughter, Maddie, having a case of autoimmune psoriasis on her scalp later resulted in a huge arthritic flare in the March of 2009 – a flare that turned out to be Juvenile Rheumatoid Arthritis.
Maddie Genest was diagnosed with JRA one week before her 9th birthday, this past March, by the renowned Dr. Rosen at Children’s Hospital of Pittsburgh. For the past 7 months, Maddie has tried multiple treatments ranging from Naproxen, to Prednisone, to Enbrel, and now, Remacaid. However, this brave little girl, who hails from Erie, Pennsylvania, has not let the diagnosis or treatments hold her back or bog her down.
When approached to be the honoree for our 2009 Jingle Bell Run, Maddie did not hesitate. Her mother says that Maddie claims “she has arthritis for a reason” and that she hoped that by being our honoree she would help another kid – or better yet, a few others – who are going through the same type of illness and may be scared. This positive attitude has been the norm throughout the course of this illness, so far.
While Mrs. Genest notes that, naturally, Maddie has her “bad” days, she says that her daughter maintains a mostly positive attitude about living with this chronic illness. While she may not be able to do the monkey bars like some of the other kids on the playground, she’s taken up swimming at the local YMCA, and also enjoys indoor soccer when she is feeling well enough to play, as well as singing, hanging out with friends, and “normal girl things” like shopping.
She’s also had a hand in her treatment. Maddie tried Enbrel injections for a period of time, even giving herself the shots at 9-years-old, but, found them to eventually be too painful. Instead of giving up, it was she who decided upon Remacaid – an intravenous therapy – in Dr. Rosen’s office at Children’s Hospital. Mrs. Genest says that it was Maddie asking the questions: how long will it take, what’s an IV? So, at her discretion, she decided with her parents and Dr. Rosen to try the Remacaid treatments and has completed her first round successfully.
Not all children would be so adaptable. Maddie learned a lot about Juvenile Arthritis at Camp JRA this past summer. She loved it, and enjoyed spending the time with children to whom she could relate, and vice versa.
While every day isn’t rosy, Maddie is sure not to walk around life with a cloud hanging over her head. Her school – a Montessori school – has went above & beyond in making adaptations for Maddie without singling her out as different from the other children. For instance – her class no longer sits on the floor for “circle time” – to make it easier on Maddie. Also, during long testing such as the PSSA’s, Maddie has the option to have an aide fill in the little circles for her if her hands begin to hurt. Mrs. Genest acknowledges gratitude for these special accommodations that allow Maddie to still feel like a normal child, while getting the adaptations that she needs.
One of the hurdles that Maddie and her family faced early on in her diagnosis was the fact that so many are ignorant to the fact that children can get arthritis, too. She hopes that by being our Honoree for the Jingle Bell Run she can spread awareness to people of all ages that arthritis can affect children her age and even younger.
Even though Maddie’s joints may ache, and her grip strength is now 2x weaker than the average 9-year-old, in our minds and in the hearts of her family, Maddie is far stronger than many people her age…and maybe even three times her age. She deals with the burden of a chronic and disabling illness with charm and grace, serving as a positive and inspirational role model for anyone – of any age – who suffers from arthritis or related disease. We thank her, and her parents, for being a part of our upcoming Jingle Bell Run. We are proud to salute her as she continues to fight this beautiful battle.
- Ashley Boynes
Community Development Director
Western Pennsylvania Chapter
Tags: AFWPA, arthritis, arthritis walk, Ashley Boynes, autoimmune, Camp JRA, Childhood Arthritis, children, Children's Hospital, Children's Hospital of PIttsburgh, Erie, Hero, honoree story, inspirational, JA, JBR, Jingle Bell Run, JRA, Juvenile Arthritis, juvenile rheumatoid arthritis, kids, Kids Get Arthritis Too, Maddie Genest, pennsylvania, personal experiences, Personal Story, Pittsburgh, psoriatic arthritis, Western PA
You can comment below, or link to this permanent URL from your own site.