This is a pretty new blog so if you don’t know me, let me take a minute to tell you some of my background. In 2007 my son was born in almost complete heart failure and the next day he suffered a massive stroke as one of the side effects on being on a heart-lung bypass machine. He is now six and has a moderate case of cerebral palsy, uses a wheelchair and cannot speak. I spent almost every waking hour of his first three years of life driving him to therapy, researching therapy, or doing therapy myself.
And I am not telling you this so you’ll give me a pat on the back. I did what I think every mother does–I took care of my baby. And I still do. What I did not do, however, was take care of everyone else’s baby.
Which is why I am in awe of my friend Kristen and her daughter Daisy and want to tell you a little bit more about them. Last February Daisy was diagnosed with a potentially life-threatening illness known as Juvenile Myositis. JM is an auto-immune disease that causes muscle pain, weakness, and fatigue and can affect almost any system of the body. Right after Daisy was diagnosed, Kristen, Daisy and her parents drove to Chicago in an RV to meet and talk with a doctor who specializes in this condition. Can you imagine?
Once Kristen found out about JM and about the fact that there’s no cure, she hit the ground running. I mean RUNNING. Her only daughter was receiving chemotherapy to help stem the tide of this disease and Kristen was already doing everything she could to help raise awareness and funds to help find a cure for this disease. She has personally raised around twelve thousand dollars in the last year. She’s raised all that money while caring for a daughter with a life-threatening condition that requires a challenging medication schedule.
She’s pretty freakin’ amazing.
Daisy continues to have her ups and downs with her condition–some days are good and some days aren’t. She has to take a lot of medications and as a result is not able to attend school. Kristen probably has her moments where she thinks about how hard this is–I know I would–but she pushes forward. Not just for Daisy, but for all children affected by JM. She tweets, Facebooks, and fundraises constantly to raise awareness. She is truly amazing. Her strength of spirit and her love for all the children with JM is awe-inspiring.
Right now Kristen is raising awareness and helping fund a cure by selling T-shirts for Daisy. You can purchase those t-shirt here. In addition to this, Kristen is on a personal mission to celebrity of some sort to take a picture wearing one of her shirts. Maybe you know someone that might be interested? May you yourself are famous and want to wear this darling number? Let us know! You can message me at katy [at] northshoreparent [dot] com or just leave us a comment right here. You won’t be sorry!
If you’d like to keep up with Daisy, Kristen, and their story you can like their page on Facebook.