Super McKenna

In today’s fast paced society, there often seems to be a pre-established timeline for everything: walk by age 1, read by age 6, attend college after high school…

But, really, we are all unique, and our timelines are all our own.

While it takes most of us a long time to figure out that this timeline is imaginary, Super Mckenna has always known. She has made her own timeline in life since day one. Super McKenna was born on April 5th, 2016. This was three weeks before she was supposed to arrive, and she came with no warning whatsoever!

Super McKenna had her first seizures on August 18, 2016. She was initially diagnosed with epilepsy, but her family immediately knew something else was off. The pattern of her seizures kept changing. Within a month, she was diagnosed with infantile spasms, a much more rare and detrimental form of epilepsy.

“The unknown is really scary for us as her parents. She is so young and it’s hard to tell what the future holds. She isn’t having spasms anymore, but we are constantly on eggshells about when she may have another seizure. Recently, McKenna also spent a week in the Epilepsy Monitoring Unit hooked up to a video EEG. Her medicines were drastically weaned in a rapid amount of time. Watching her endure severe seizures during that time was absolutely heartbreaking.” -Super Mom Alicia

When most people see Super McKenna and find out that she is 2.5 years old, their first questions always focus on walking and talking. Right now, Super McKenna is not doing either of those things, but she works so hard and has made so many developmental leaps in her own time. She is making progress on her own terms as her brain learns and develops. Her determination to overcome every obstacle placed in front of her is a trait that very few of us possess.

Super McKenna is now able to move around by scooting on her bottom, can sit up on her own, pull from sitting to standing and feed herself! She communicates with simple signs such as “more,” “milk,” “all done,” and “water.” All of this takes a lot of practice, but there is absolutely no doubt that, in her time, she will SOAR!

“McKenna is so smart even though she is still finding ways to communicate her knowledge. It’s frustrating for her, and us, to know she so badly wants to tell us something but just doesn’t have the skills yet. We are doing so much for her but, I always want to be able to do more. That’s always a tough spot to be in…we work and work and eventually it clicks. It takes a lot of time, and it tests our patience at times. This little girl deserves the world and more for the cards she’s been dealt, and yet she wakes up with a big smile on her face each and every day. We have learned to take things one day at a time and always remember the quote ‘Little by little, a little becomes a lot.’”

Super McKenna’s ability to understand time, her incredible determination, and her contagious laughter are just a few of her superpowers. We are amazed by her story, and we can’t thank her enough for being such an inspiration. We love you, Super McKenna, and we can’t wait to see the many Extraordinary things in store for you in time.

2 replies
  1. Cecelia Riggi
    Cecelia Riggi says:

    We are blessed to be Super McKenna ‘s Papa and Nana. She is an awesome little girl that continues to amaze us every day. She has the most wonderful parents and we love them all so very much. Thank you for what you do for these tiny super hero’s. McKenna’s cape is great!!

  2. Magan Ellis
    Magan Ellis says:

    I love McKenna’s story! My son had seizures since birth and developed infantile spasms at 1 month. He was diagnosed with Ohtahara Syndrome. He also has stopped having spasms! My son will be 2 in March. We love hearing about little ones that in similar situations!


Leave a Reply

Want to join the discussion?
Feel free to contribute!

Leave a Reply

Your email address will not be published. Required fields are marked *