Once again, this year, we're participating in a walk to cure JM! The Walk Strong Across America will begin on July 4th and continue throughout the week, bringing Cure JM families in all 50 states together for one (distanced) walk event, to support research for better treatments and a cure.
Emily was diagnosed with juvenile dermatomyositis just over three years ago, just around the time when her brother Jude was born. Shortly after her third birthday, she started showing signs of muscle weakness and inflexibility, and quickly declined to the point where she couldn't climb stairs, sit up from a prone position, or, eventually, swallow or digest food effectively. We went through five grueling weeks of tests to rule out muscular dystrophy and finally confirm the diagnosis of JM (and in the meantime, we had a baby).
I remember vividly the first time that Emily stood up again by herself. She was at the height of heavy medications that were ravaging her body, and we had decided to take a couple of days at the beach as a family. We had just bought a kite, and Bill and Emily spontaneously decided to go down to the water to fly it, as I stayed on the Boardwalk with a sleeping new baby Jude in the stroller. I watched as Emily crawled through the sand following Bill as he got the kite to lift up overhead. I could see the frustration in her little body as she tried to keep up while crawling around, and then the resolve that came across her when she finally decided that she’d had enough. From afar, I witnessed her struggle to stand and finally achieve her goal! It was an emotional and celebratory moment after months of struggle and worry.
That moment was a turning point. Emily continued to gain strength week by week, and month by month -with the help of a team of excellent doctors, heavy and serious medications, regular physical therapy, and most of all - the fierce determination of a little girl who kept a positive attitude and worked hard through it all.
In March, with the threat of COVID and worry about her weakened immunity, we sped up the weaning process and took her off of the final low doses of methotrexate, not sure how it would go. We are happy to share that she has remained strong without the medications, which is such a relief!
We are not out of the woods. The disease could come back at any time, as it has for so many families who have relished in the word “remission” for a time, only to have the disease come back down the road. If it does, we’ll be okay. I mean, we’ve been through a difficult diagnosis, a major house fire, and well, you know the rest…
Once a year during the annual walk, we ask for support from family and friends for the Cure JM Foundation, which has provided us with support and resources throughout our journey. The most important goal, of course, is funding research for new treatments, and ultimately, a cure.
We know that there are many deserving causes during this difficult time, and we appreciate anything you can give to support Cure JM and Emily. Thank you, from the bottom of our hearts.
Leah and Bill