When we titled this blog years ago, I don’t think either Brandon or I had a clue what a “marathon” Maddie’s issues would turn out to be. We had thought of her fight against leukemia as a marathon in that the treatment is so long. We certainly didn’t expect the epilepsy diagnosis, and we had no idea that if Maddie won her battle against cancer that we’d be stuck fighting other different, and often more debilitating health issues for the rest of her life.
But it is what it is. And we battle on. Things haven’t changed much, if at all. We are still trialing meds, and have very few options left. She is still happy and precious and hands down the most amazing child I could ever have imagined having. But it still breaks my heart everyday to watch the seizures and know that they are robbing her of a normal life. I’ll give a more detailed update on what is going on in our lives in a later update, but I needed to get this out there because I am planning something important and I need to stop putting it off.
Many of you who follow this blog were part of our fundraising efforts for the CureSearch MileStones walk in Charlotte in 2008. That was right before she turned two and started having seizures, and sadly, that was the last time we did any fundraising. I am ready to change that and I decided that since I will run my first full 26.2 mile marathon this year, that I want to raise money in honor of her to give more meaning to my training and my race. I always think of her as my motivation during a race, but this time I’d like to make it more special and feel like I am really doing something to support the causes that mean the most to me.
Now that epilepsy is her main battle, that holds the place closest to my heart because it gets so little awareness, at least as far as how catastrophic it can be. Those of you who’ve followed us for a long time may remember my prayer that what we were seeing was in fact seizures, because I thought that meant it was something treatable. Not something that would steal her life from her and leave us with seizures daily over three years from when they first reared their ugly head. I still want to raise money for cancer research though, because in our case, we know that Maddie would likely never have developed seizures if it weren’t for the cancer, and the chemotherapy treatments which caused her neurological issues. If cancer treatments were improved, and more targeted to specific cancers, rather than so extremely harsh on tiny babies’ brains, this might not have happened to her. So I plan to raise money and awareness for both while I train for this year’s Marine Corps Marathon, http://www.marinemarathon.com/
I will raise funds for CureSearch, the fundraising arm of the Children’s Oncology Group, which still remains my pediatric cancer charity of choice. Their website is http://www.curesearch.org/ And I will raise funds for CURE Epilepsy, an epilepsy research group that allows me to target my donations toward particular types of epilepsy, so that I can funnel our funds to Infantile Spasms research. This is the type of epilepsy that Maddie has and it is one of the most catastrophic types and it is where I want my dollars to go. You can check them out at http://www.cureepilepsy.org/ So in an effort to keep things simple, I hope to raise money to support each evenly. For those of you who want to donate, I’ll be setting up a fundraising page in the upcoming week and I will link to it here when I have it done.
One of my fundraisers is going to be a T-Shirt and athletic shirt sale. I hope to get that up and running in the next few days. Because the race is in late October and November is Epilepsy awareness month, I believe the shirt will be purple, the color of epilepsy awareness. I’m still working out the details, but there will be youth shirts, and shirts for both Men and Women, cotton tees or technical race shirts. My hope is that others of you who like to run races might wear the shirt during another race to help spread awareness. I am still debating whether or not to try to get sponsors who could advertise on the shirts, which would certainly help me to raise funds, but which would slow down the t-shirt design and ordering process. If any of you loyal readers have any thoughts on this, shoot me an email. The race is sold out, so unfortunately, I can’t really try to recruit more folks to run it with me. But I will be running it with many of my friends from Camp Lejeune, and hopefully Brandon too. It will be really exciting for me to get to run it with people I love, in support of my amazing kiddo.
If the schedule works out, we might try to participate in the CureSearch MileStones walk in Charlotte again this year. Now that we are living in Raleigh, the trip to Charlotte is much easier for us. I’d love to get a good size team together again for that and we could wear our shirts to that too. Though they’ll be purple for epilepsy awareness, they’ll have reference to her battle with leukemia as well.
I’ll be in touch again soon. And I’ll try to update the pics on the blog header too. Love to everyone!
Liz, Brandon, and Maddie