Steph Brown wrote -
I can't believe how time has flown by! Its been one year since our first annual Walk for a Cure- for Juvenile Dermatomyositis (JDM), so you know what that means! Our second annual Walk for a Cure is scheduled on 9/30/2018 at the same location as last year, Green Hill Park in Worcester MA. Last year we raised 50k dollars to put towards awareness, research and making strides to one day a cure for our kids!!There is no way we could have raised that much money and had such a great turnout at the event, without the love, support and generosity of you! To see your friends, coworkers, families and even strangers donate, join our team, fundraise and/or just show up for the walk is absolutely amazing! It is a really fun event with the short walk, a dj, food, bouncy houses, crafts for the kids and face painting. We also have a big raffle table- so any product donations are welcome as well.
Cadence will be going into her 4th year since being diagnosed at BCH when she was only 18mo. JDM is a rare autoimmune disease that affects the skin, blood vessels and large muscles. A fast diagnosis and hard core medication regimen from the day of diagnosis gives our kids the best chance at remission. Unfortunately kids in other states can suffer longer, and thats where awarness comes into play. Being misdiagnosed, undiagnosed or the worst- being told as a parent to stay off the internet- is very frustrating! There is no cure for the disease- just hope that some combo of drugs will place your child Into remission. Once in remission- if your lucky enough to get there- you always have to stay out of the sun, be vigilant w/hand washing and preventing illness as these could trigger flares. Cadence had a rough first year finding what treatment regimen worked for her. After a year on IV & oral steroids they realized she was not absorbing the drugs bc of gut inflammation. She was then placed on IVIG, an infusion of antibodies , every 2 weeks for well over a year. She would have an IV line placed each time and the infusions would take 7 hours- with awful side effects. Luckily the side effects were worth while- as I think IVIG was the answer She needed. Cadence has since been weaned off (primarily bc she would freak out getting the line in and it ended up being best to trial her off instead of traumatizing her every 2 weeks.) Fingers crossed, she is doing fantastic while only on a shot of methotrexate a week.
JDM is, and will always be, a part of our everyday. It dictates our daily plans (esp in the summer), excludes us from events in the winter “sick time” and puts Cadence at risk while in school bc she cannot be vaccinated. My dream is one day not having to think about JDM everyday. We need a Cure!
Please consider making your yearly donation to our Walk for a Cure and help Cadence be a carefree kid! There is nothing worse then having a chronically ill child- lets help make those statistics smaller! Thank yoy thank you thank you!
❤️Steph, Jay, Conner & Cadence Brown