11.14Lifestyle

Juvenile Rheumatoid Arthritis

My Song is Louder than Your Song

Imagine a world without sight; no longer marveling at the fall colors or appreciating the beauty of a simple smiling face. This is the potential reality for tens of thousands of children and young adults, my niece Marcella included. At the age of 3 1/2 she was diagnosed with Juvenile Rheumatoid Arthritis (JRA) and has since endured daily steroid eye drops, weekly drug injections and monthly infusions at Children’s Hospital in order to control the disease that threatens the gifts that so many of us take for granted. Over the past many years doctors have tried to wean her off the eyedrops and infusions, but the inflammation behind her eyes persists. This past September I went with Marcella and her parents to see what she has to go through to help control the disease. I wanted to better understand what my young niece endures. I witnessed pain, sadness and heartbreak. Yet, none of it was hers; it was mine. I marveled as a young child, innocent to the world, battled with a smile on her face and a song on her lips. She amazed me. I understood that she did not want pity and that is not why I have chosen to do this. She wants what the rest of this world wants; more research, more funding and eventually a cure and I want to share her story to raise awareness for this disease. Marcella’s parents do not use any form of social media. They are very private when it comes to their family but they have given me permission to tell Marcella's story to hopefully help spread the word about this disease. These photos reflect the once a month visits to Children’s Hospital that Marcella and her family must go through. They are not however a reflection of the rest of their life. Marcella is one of the strongest, most caring and creative 8 year olds you’ll ever meet. Even though she has grown up with the disease, Marcella is not defined by JRA. Join with me today on this day of giving thanks and send a prayer to the man above or whoever you pray to, lets find a cure. If you feel inclined and I hope you do, please visit the Arthritis Foundations website at, www.arthritis.org to learn more about the disease and how to donate, even if it’s just a dollar. Blessings to you all and have the happiest of Thanksgivings!
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