Kelly Cervantes

Patient Leader

Thank you so much for your interest in our family’s journey with a special needs child! I am the mother of two incredible children, Jackson (7yo) and Adelaide (3yo) and wife to the ludicrously loving, talented and handsome, Miguel Cervantes (Hamilton: The American Musical). In May 2016, Miguel and I received two life-changing pieces of news: Miguel had landed the starring role of Alexander Hamilton in Hamilton: An American Musical in Chicago and, our then 7-months-old baby, Adelaide was diagnosed with epilepsy and eventually, infantile spasms, a severe form of childhood epilepsy. We would go on to add mast cell activation syndrome, dysautonomia and developmental delays to her still undiagnosed condition. I transitioned from being our family’s primary bread winner to a stay-at-home mom/nurse/pharmacist/therapist and it was hard, like, REALLY hard. I found solace in a community of other special needs families and in 3am Google dumpster dives learning everything I could about my daughters condition. Eventually, I found my voice and purpose with the non-profit, Citizens United for Research in Epilepsy (CURE) and am currently a board member. My truth is that, at this point, there is little we can do to definitively improve Adelaide’s condition: we are waiting for science to catch up to her. But I can raise money and awareness to help push that science forward a little bit faster. By organizing fundraising campaigns, speaking at epilepsy events across the country, writing my blog “Inchstones”, and hosting CURE’s podcast “Seizing Life”, I am able to feel productive and like I’m helping my Adelaide as well as all the Adelaide’s to come. My hope is that by publicly sharing our family’s journey and the real life moments that come with parenting a special needs child, I can raise the awareness needed to fund future research. Thank you again and I invite you to join me in living life one inchstone at a time.

Location

Chicago, IL

Nominations

Patient Leader Hero

Winner

Best in Show: Blog

Kelly is one of the strongest and sweetest people that I have met along my journey with epilepsy. As she cares for her precious daughter who is battling epilepsy, Kelly too helps others along their journey, raising awareness and is an inspirational mother and wife. It’s an honor to know her and call her a dear friend!  — Tiffany

Kelly has taken the extremely difficult situation of our daughters battle with undiagnosed epilepsy and all the struggles that go along with a special needs kiddo and turned it into an opportunity to educate folks and offer support to families who may feel alone and misunderstood. She is a champion for our family and others like us.  — Miguel

Kelly Cervantes

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