When I was 16 years old and a sophomore in high school I was struck with a rare neurological condition that made me incredibly weak. I ended up at CHaD after my parents came home from work one evening to find me sitting on the front steps as I had been unable to turn the key in the lock to get in the front door after school. I was a strong, healthy, three-sport athlete who suddenly could barely climb a set of stairs, who couldn’t pull a brush through my hair, and who couldn’t lift a glass of water with one hand. I was profoundly weakened, with no reflexes anywhere in my body. This was incredibly scary for me (and now that I am a parent myself I can only imagine how scary it was for my mom and dad as well), but the doctors, nurses, residents, and phlebotomists immediately set to work trying to figure out what was going on. I was an inpatient at CHaD for five days, during which time I received infusions of human immunoglobulin, which for me felt like a miracle. By the time I was released from the hospital I was 85% back to normal and within a few weeks I was back to regular strength. That fall we found out that my condition was chronic, and thus I became an ongoing patient.
I stayed with my pediatric neurologist, Dr. Richard Nordgren, until there was no way I could still be classified as “pediatric.” With his care I was able to resume a normal life, though I had to have infusions every 5 to 8 weeks for the next 22 years. This past December I was declared in remission, and as of this writing, in three days it will have been a year since my last infusion.
When I found out about the first CHaD Half, it was less than two months prior to the race and I had never run more than a 10K race in my life. None-the-less, I was eager to give back for all that CHaD had given me, so I signed up and started running! That year I was the second highest fundraiser, and I knew I wanted to keep working to give back to CHaD.
Since 2006, I have participated in every single CHaD HERO event. I haven’t run the half marathon since 2010 (my daughter was born in 2011 and I pushed her in the stroller at 5 weeks old with the threat of Hurricane Irene bearing down on us), but this year for the 15th CHaD HERO, I’m once again buckling down to train for 13.1 miles. It will be hard to get through all those miles leading up to the race, and I will miss the atmosphere on the Green on race day as we’ll all be doing our own virtual races. But, I hope this year that I’ll be able to break $50,000 total dollars raised over the past 15 years for CHaD!
— Joanna Miller, former CHaD patient & soon to be 15-time CHaD HERO participant