I am so excited to be running the Boston Marathon this April with the Miles for Miracles team to help the brave kids at Boston Children's Hospital. Boston Children's has meant so much to our family over the years, and I know how much BCH means to so many other patients and families.
In January, I was fortunate to meet my patient partner, Killian, and his amazing family. Killian is an adorable 8 year old boy who has been a patient at BCH since he was in Kindergarten. When my son Ryan and I met Killian, he told us jokes, about how much fun he has playing outside in his backyard (especially on his zip line!) and his favorite band (The Beatles!).
Killian's mom Katie recently shared more about their journey with BCH. It is an incredibly moving story, and I didn't want to change anything she wrote, so am pasting below:
Why did the banana go to the doctor?
He wasn’t PEELING well!!
That’s Killian's go to joke, that you would undoubtedly hear if you met him.
Killian's first seizure happened when he was in kindergarten. The next one happened a few months later. First we were told he may grow out of it, then everything got worse. Killian began having EPC, (Epilepsia Partialus Continua). Killian now pushes through 6-10 seizures per hour. Sometimes only 30 seconds, sometimes 6-7 minutes long. This sounds like something that would slow a kid down or trouble him in some way, but Killian is a warrior. A true champion. He is the kindest kid you could meet and is always thinking of others. He’ll yap your ear off with joke after joke, or ask if you need a back rub. He likes to play soccer in the yard, ride his zipline or talk trash at you while playing Mario Kart. Killian solves disputes with rock, paper, scissor battles or even dance battles, as he has some real classic moves. Killian is 8 years old now and the doctors work really hard at trying to figure out the best course of treatment. He undergoes frequent MRI’s,monthly IVIG treatments, lumbar punctures, has had a brain biopsy and several long EEG’s. At one point his doctors discussed a hemispherectomy.
When he is staying at the hospital he charms the staff with puppet shows and drawings and loves to help decorate the playroom.
We are so thankful for the BCH team from the doctors and nurses, to the child life specialists and everyone in between. They have made every moment of this journey easier. Killian actually gets excited to go in and see his “nurse friends”.
As a Beatles fan Killian believes that "all you need is love" but the truth is he needs your help.
I am running for Killian and all of the amazing people at Boston Children's Hospital. Please support my fundraising and help the incredible kids and families at Boston Children's Hospital.
