How you can make a difference
Now, this is a story all about how my life got changed for the better and I feel all warm and tingly inside. And I liked to take a minute; just sit right there. I'll tell you how I became involved in a great charity that helps siblings of cancer patients.
**if you don't feel like reading my entire story, just skip to the last paragraph. That's where the important stuff is. ;) **
As some of you may know, I have three precious little sisters; ages ten, eight, and six. They're the smartest, sassiest, brightest, happiest, prettiest little girls I know. Two of them, however, have an illness. The unique thing about their illness is that no one knows what it is. When the now-ten-year-old was nine months old, she started walking. She'd been walking for three days, then she had her routine Hep B vaccination. She went to sleep shortly after, and once she woke up, things were never the same. Within just a few hours of receiving the shot, she went from being happy and bouncy and energetic, to being miserable and in pain. She couldn't hold her head up, sit up on her own, or even open her hands. September of 2002 was the last time she ever walked on her own.
We immediately went to hospitals all over Louisiana, and were finally given an "answer". The doctors in New Orleans told us to treat every day like Christmas, because she wasn't going to make it the three months to December 25th. They said there was nothing they could do.
My mom, of course, wasn't okay with that. Instead of accepting this, she began to research every second she could. We went to doctors all over the country; New York, Dallas, Houston, Boston, San Diego, Chicago - you name it. The doctors each gave a different diagnosis and none of them really knew what the problem was; but they knew one thing for sure: it wasn't genetic.
After concluding that it was just a reaction to the shot and not genetic, my mom had another child (the now eight year old). She was perfectly "normal". Walking, talking, etc. She was totally fine. So, this told us that the doctors were right; it couldn't be genetic.
My mother had another baby girl (the now six year old), and she, too, appeared to be 'normal'. She was crawling, sitting and 'cruising the furniture'. She never walked, though. When she was about a year old, we noticed her regressing. We got an MRI done. Her scan was almost identical to my other sister who was sick.
We've seen doctors all over the world and have the top specialists working on their case; yet it's still a mystery. Technically speaking, looking at the brain scans and surgeries they've done, my two sisters shouldn't be alive. They're missing necessary tissues, muscles, and parts of the brain that you should have to have in order to survive. But, here they are, still going strong. Witty comments and sassy dress up days and piano practice and all.
The girls who are directly affected by this still-unknown-disease (the ten year old and six year old) are regularly in physical therapy and have routine doctor appointments. At least two days out of every week, we're at the hospital and doctor's office for check-ups and new tests.
What a lot of people don't understand, though, is the strain it puts on the entire family. I've been incredibly blessed to have a family that continues to strive too find not only a diagnosis, but a cure. Still, though, when children (or even adults) of a family are affected by any disease - life threatening or not - it can be an incredibly difficult time for everyone involved in the family. That's why I'm so thrilled and excited to support an organization geared towards helping the siblings of children with cancer.
One of my best friends, Sarah McMullen, came up to me a couple weeks ago and told me about a great organization called SuperSibs. They have this fun, groovy thing called Sibtember. It's when you show your support of children who've been diagnosed with cancer and their siblings. Basically, wear suspenders for the rest of September, and spread the word! You can learn more about the charity here and more about Sibtember here. Feel free to wear suspenders to school or nights out with friends. I know some of you are going to hear a hot new band this Friday, and I'd love to see you there with your suspenders!
Xx