Friends and Family- "To whom much is given, much is expected." A message I believe in. Please take two minutes to read my story. When I ran my first race in 2007- the Chicago Marathon, I thought my new "hobby" of running would be good for my health, but in retrospect perhaps the most important outcome is that it has been a way for me to give back to important organizations in need.
This year I've joined the Credit Unions Kids at Heart -Miles for Miracles team to help the brave kids at Boston Children's Hospital and by extension, the kids at Children's Mercy in Kansas City.
I would like to introduce you to Anthony Micalizzi pictured with me. He is my "patient partner" for the race this year. I met his parents Kristin and Anthony Sr. along with a couple of his siblings recently as they shared their story. Anthony is 15 years old, he is wheel chair bound, and non-verbal. He suffers from an extremely rare neuromuscular condition that causes him to have spastic quadriplegia, global developmental delays, along with seizure and movement disorders. Even with all of those challenges, one look at this picture and his infectious smile just melts your heart!
I recently spoke with two local families Scott and Leila G. from Lenexa, KS, and Kat and Adam B. from Overland Park, KS. Leila and Scott's son Joey was flown to Boston for a complex surgery to be performed at Boston Children's Hospital and subsequently released back to KC for an extensive post operative therapy program at Children's Mercy. Here is what Leila had to say about the experience:
"When our son Joey was diagnosed with Moyamoya eight years ago (he's 12 years old now) at age four we knew his life saving surgery should be performed at Boston Children's Hospital by Dr. Edward Smith and team. Knowing your child is being cared for by a team that has a wealth of expertise and knowledge has been invaluable to our son and family.
Our son's local team of doctors at Children's Mercy in Kansas City has worked closely with the team at Boston Children's Hospital to create a care plan that has adapted throughout his journey. This plan included working with neurologists, physical/occupational therapy, hematology, radiology, and mental health services. We know this collaborative approach has been integral to our son's incredible recovery after four ischemic strokes, two surgeries, trans ischemic attacks and seizures."
Kat had this to say about her family's experience:
"In 2021 our son, Walter, was diagnosed with Moyamoya at age three after experiencing an ischemic stroke. Soon after his diagnosis we were connected with Dr. Edward Smith and the team at Boston Children’s Hospital and one month later Dr. Smith performed brain surgery on Walter.
Dr. Smith continues to follow Walter and we also have a team of doctors locally at Children’s Mercy Kansas City who follow him in neurology, hematology and rehab medicine. We feel so blessed to have access to such world-class care both locally and through Boston Children’s and are so grateful for the collaboration of these two teams."
This is why I am running Boston this year!
The Boston Marathon is April 15th, can I count on your help once again?
Every dollar I raise for Credit Unions Kids at Heart funds breakthrough research and vital support services for sick kids and their families. Your gift will:
- help children from your town and across the world get a second chance at life;
- give kids battling the most complex diseases care they can't find anywhere else;
- fuel 3,000+ researchers working to develop new treatments and cures;
- support patient programs, like music and art therapy, to let kids be kids, even during long hospital stays;
Please support my fundraising and help the incredible kids and families at Boston Children's Hospital as well as Children's Mercy in Kansas City.