I am running for Eli, my son, the strongest & bravest person I know. Eli is diagnosed with a rare form of Limb Girdle Muscular Dystrophy. Rare is never a word you want to hear before a diagnosis because it means we often don’t have answers to what is going on with his health. Eli’s rarest symptom of his diagnosis is that he has brain atrophy, and it’s happening faster than expected. Eli struggles with feeding intolerance - he feeds with a central line, cortically blind, limited muscle strength/ control, needs respiratory treatments, slow GI motility, and managing pain. Eli has had more surgeries, blood draws, hospitalizations, doctor appointments, MRIs, tests, etc. in his short 4 years of life than anyone should have in a long life time.
Despite this… Eli continues to amaze doctors with small miracles, continues to smile and warm the hearts of many, and when feeling good has an unexplainable joy. We are learning to take one day at a time and enjoy every minute we get with him on this side of Heaven. If you’ve had the privilege to meet him, you know that his smile and laugh are infectious. You know that he loves to cuddle. You know that he loves to kick, play in water, wiggle to music, and bounce. Eli’s life has a strong purpose and plan, and as his mother it is my joy to share his story with anyone that will listen. He has touched so many lives already and I am so lucky to be along for the crazy ride.
After my 3rd Chicago marathon years ago, I thought I would never do another one… then Team Eli was created in 2018 and I signed up for Chicago 2018 marathon (my 4th marathon). The support, team, love, and donations we received was mind blowing… I’ve been on a high since Chicago 2018 marathon from all that support for Team Eli. But it’s time to get back at it again. It’s time to put more miles in for my son. It’s time to keep telling his story.
I run because he can’t. I run because he made me a mom. I run because he has taught me how to be brave. I run because he has taught me to never say never. I run because I want to bring awareness to a rare disease. I run because his type of MD NEEDS more research and answers. Please join me in supporting MDA for Eli, my real life superhero. Any donation makes a difference. Thank you from the bottom of this momma’s heart.