It was the middle of 2020 that our four-year-old granddaughter, Brooklynn, began developing outbreaks of what appeared to be butterfly-shaped rashes over her cheeks and nose and what would later be determined as gottron’s papules on her knuckles and hands. Her pediatrician ordered blood work and determined “all was well”, nothing to be concerned about. This didn’t sit well with my daughter and I so, we decided to seek a second opinion.
The second pediatrician immediately referred us to a pediatric rheumatologist who ordered a series of diagnostic tests (blood work, MRI and a muscle biopsy) and in February 2021, Brooklynn was diagnosed with Juvenile Dermatomyositis (JDM). It was at that point we began living our lives with the unknowns of the rare disease known as JDM.
It can be difficult to stay on top of things. Keeping tabs on her current and any new symptoms that may arise, ensuring family members are up to date with her physical and nutritional needs and making sure the school stays on top of her need for sunscreen. Often the rashes that appear make her feel self-conscious and she wants them covered with band-aids and/or long sleeves to avoid unwanted attention or questions from children at school. It can be scary and exhausting, but our love knows no bounds. I am thankful for the endless support and perseverance our family has shown to support Brooklynn.
I retired from employment in March of this year giving me more time to assist my daughter with Brooklynn’s care and doctor’s appointments. I am completely dedicated to finding resources and services to help us care for our granddaughter in the most appropriate and meaningful way possible. Besides our new medical team, our most helpful discovery has been our connection to the Cure JM Foundation. The information and connections with other families battling this rare disease provided through Cure JM have been invaluable to our family.
Since our connection with Cure JM, we’ve been able to host a community walk, a bowling event, and support Giving Tuesday. In addition, we are preparing to host a dinner event and a bowling tournament in our local region. I am committed to continue our efforts to provide education and raise awareness for research and the improvement of current treatment and care. Brooklynn continues to face the ups and downs of treatments, hospital visits, and living with JDM but with the love of her grandma and grandpa, her whole family, and the support of Cure JM, she has hope.