, , , , , , , ,

Super Evie

Meet Super Evie!  We are so excited to have her on our TinySuperheroes Squad!  Super Evie brings with her several superpowers, including Spina Bifida (Myelomeningocele), Arnold Chiari Malformation type 2, hydrocephalus, tethered cord syndrome, club foot, and neurogenic bowel and bladder.  This amazing four year old is an incredible TinySuperhero with an amazing loving and outgoing personality!  We are thrilled she is here with us on our squad!

 

When Super Evie’s mom was 20 weeks pregnant they first heard the words Spina Bifida at her ultrasound.  They were immediately referred to FCI at Cardinal Glennon Hospital in St. Louis for further treatment before Super Evie made her entrance into this world.

 

Just 14 short hours after Super Evie was born, she underwent her first surgery.  Her neurosurgeon, with the help of a plastic surgeon, closed her spine and then her back. Then, when she was 5 weeks old Super Evie had her first brain surgery. The next few months after that were really rough and hard for her family; Super Evie was on thickened liquids to prevent aspiration and on oxygen support 24/7 with monitoring. At 13 months old she had her second brain surgery which helped relieve the symptoms she was having. To date she has been pretty healthy, although she has endured a total of 11 surgeries/procedures mostly on her brain and spine, but she has also had foot surgery, eye surgery, and some procedures on her bladder as well.  Super Evie is an amazingly strong fighter!  Her mom calls her their little diva princess.

Given her superpowers, Super Evie is noticed when she is out in public. Although she has a big personality and is truly a diva, most of the attention comes when she is in her wheelchair.  Super Evie’s mom says, “While we agree she’s darn cute it does seem like the attention she is receiving is because of the way she is mobile, which really breaks my heart. I wish people would see her and say those same things without the chair. And when they do see her in the chair, rather than staring or pointing or telling your kids to ‘get away’ why not have your kids say ‘Hi, my name is ____, what is yours?’ At the end of the day she’s just a regular kid and should be treated the same. While it is all well-intended attention, it can sometimes be taken the wrong way.”

Super Evie has an amazing big brother and super sidekick named Gavin.  Even though he has spent so much of his own childhood in hospitals, with just one parent at home while the other is with Super Evie at the hospital, at special events for his sister, or at therapy appointments, Gavin takes it all in stride.  His mom says he is the most loving and compassionate child you will ever meet!  He is Evie’s biggest cheerleader and encourager.

Super Evie has overcome SO MUCH in her little life it truly is miraculous!  Super Evie has gone from being on oxygen 24/7 and only being able to ingest thickened liquids to a walking, talking miracle. Physical therapy is probably one of the biggest challenges she continues to deals with on a daily and weekly basis.  Her family is always striving to push her to accomplish all she can, and she does!  There are a few things that are extra challenging for Super Evie and they are mostly related to her gross motor skills.  Things like navigating her classroom, interacting and playing with her friends, keeping up on the playground and enjoying outside games are all very difficult for her.  However, Super Evie is an incredibly strong TinySuperhero and amazing fighter.  She could be so bitter and angry but she isn’t; she is happy and vibrant, silly and an absolute diva and her parents wouldn’t have her any other way.  Super Evie has this incredible ability to light up a room the minute she walks in. Most people that meet her just can’t put their finger on it — they just immediately know there is something special about her. She truly is amazing!

So what’s next for Super Evie?  One day at a time, that’s what.  Her parents and brother are enjoying each and every day together and continuing to watch Super Evie use her superpowers to battle anything she’s faced with.  With Evie’s diagnosis nothing is promised for tomorrow. She could be healthy as can be today and tomorrow need a major surgery. The brain and spine surgeries are absolutely nerve wracking for her parents, and hospital stays are incredibly difficult on our family given that there are multiple children.  With all of that said, her parents wouldn’t change a thing.  They are so grateful for where they are and who is in their lives because of this little journey they are on.  Super Evie takes comfort in her special blanket, her favorite nurse Anne, her stuffed animal Mr. Owl, and usually her mommy’s iPad!  In October Super Evie is getting a promotion: she is going to be a big sister to her new little sister!  We just know she is going to rock her big sister duties.  You can follow along with Super Evie on her Facebook page Evie’s Warriors.  Keep soarin’ high Super Evie, we are so happy to have you on our squad!

1 reply
  1. mdaugherty22
    mdaugherty22 says:

    Wishing you Evie and the family the best. We have a daughter who has spent much of her time in the hospital. She also has a brother. We are sending you all positive vibes.

    Reply

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 *