Thank you thank you thank you!
July 18, 2016
Hi everyone! Hate to be that person who seemingly posts fundraisers all the time- but I promise Cadence and all her fellow JM warriors are very deserving! There is only one foundation for JDM research- and this foundation needs our support for research funding, educating for earlier diagnosis, and most importantly a CURE!
Cadence has finally made positive strides the last year with the IVIG infusions. Every two weeks she has a home care nurse who comes and starts her IV, premedicates her and then administers the IVIG. It's an all day affair- but Cadence takes it like a trooper.
I would say the most trying part of her disease at this time isn't the weekly shots or the biweekly IV starts, BUT the need for constant sun and heat protection. There is no get up and go anymore-- we have to research the weather in advance, avoid anything outside during peak sun hours and totally avoid outside on humid days. The days and times we do arrange our schedule so she can be outside we have to load up on the sunscreen and SPF clothing, have a water bottle in hand and of course a hat! People told me that one day all this would become second nature or the "new norm." Two years in and I have yet to feel like it's the "new norm", and hardly second nature believe it or not. It's a huge pain in the butt!! sunscreen + hat + a 3 yr old = torture! I'm hoping with more research, more answers, more education & more treatment options- there will be a day where JDM kids can get up & go, can spend hours in the pool or beach with their friends, can have family vacations on the lake----/ but of course all this comes with funding.
Our amazing friends & family have already gone above & beyond supporting Cadence & our family- which makes asking for more help a little harder. But this donation is for ALL the kids, each with their own treatment plan, symptoms And disease course.
JDM is a life-threatening disease that causes a child's own immune system to attack healthy tissue and cells. It can cause pain, weakness, inability to walk, disfigurement, organ failure and even lead to death. Juvenile Myositis can affect virtually any system of the body, the heart, lungs, skin, muscles, and more. Though the main symptoms & medications are the same- each child varies with severity, medication outcomes, side effects and pattern of remission/relapse.
Support from friends and family has allowed Cure JM to drive JM research forward at an unprecedented pace in the last year, funding ten research grants and two treatment/research centers. so starting today at noon, the foundation who raises the most money in 7 days will be awarded an extra 10k for their cause. Pretty special!
Disease doesn't discriminate- the feeling you have when it affects your child is indescribable- I wouldnt wish this feeling on anyone. Please help make a difference!
"Though she be but little, she is fierce." <3>
love Steph, Jay, Conner & Cadence