Team Kylie

FOUNDATION FOR SHAWNEE MISSION MEDICAL CENTER INC

2013 Britain Center Kids Campaign


Team Kylie

We never imagined the rollercoaster our lives had taken when our daughter Kylie was just 5 1/2 months old.  She was diagnosed with a rare, catastrophic form of epilepsy called Infantile Spasms.  The only type that is associated with cognitive impairment and developmental delays.  When the doc gave us her diagnosis, he was to the point and said "this is not good."

Most kids regress in their development, or simply do not continue to hit milestones and development like typical kiddos.  It can be a scary journey to travel, but every one leads to a different path.  We were fortunate enought that Kylie's issues were minor compared to some, but they were great in nature as to how much they affected her development. 

Kylie has sensory issues, which have (had) greatly impacted her experiences.  For instance, it took a few months before she was comfortable on a swing, and then when she got on, she never wanted to get off!  Many foods she would not eat, simply because of the texture.  She didn't hug us and when we tried to hug her she would get upset and try to escape.  Those are just a few of the sensory things.

In addition to the sensory, Kylie had significant social anxiety.  I can say having both sensory and anxiety was like a double whammy.  We really and truly had to take baby steps with everything we did with Kylie.  And repeat over and over again, until she finally beame comfortable with things...aka desensitize her.  This was incredibly difficult because she was essentially scared of nearly everything and everyone in her environment.  It definitely took a toll on my heart, but I had to do it so she could relax, and feel safe and comfortable. 

Now she can go to the doctor and get her height and weight without a serious meltdown and screams of terror.  She can ask for a cookie at HyVee, tell a server what she wants to eat, ask other children at the park to play with her, she eats so many new foods (yogurt, pb&j, pizza, eggs,..it goes on and on). 

But most importantly she CAN hug us!  The first time she curled up on my lap was Dec 2011.  Then last year, Dec 2012, was the first time she laid next to me on the couch with a blanket and we got to cuddle.  Nothing greater than being able to squeeze your child close and them accepting it, and even running to hug you at times!  We never thought the day would come but it did and she is just our amazing miracle!

Kylie began at IDC the Summer of 2011, and she began receiving OT for her sensory issues.  Kylie responded quickly to therapy and she developed great coping skills.  I never would have imagined that just 2 yrs later her OT told me that Kylie was graduating from her therapy and that next school year (2013-2014), Kylie would be a peer model!

I never thought that would happen so soon, or at all at times.  I figured she would go through IDC until she graduated and then things would carry on over to the school district.  Nope, not with Kylie.  She blew us away time and time again this past school year!  I just know she is destined for great things, and it makes my heart smile more and more every day!

She is more comfortable answering when called upon in class.

She walks up to her friends and says hi when she sees them before school starts

She will hug her friends and sometimes let her friends hug her

She did the Christmas program amazingly and needed no support...lots of happy tears from us!

She was not terrified at the bowling field trip when she saw her friends, and needed no assistance at all when it was her turn.  She had so much fun she was cheering for her friends too!

She has grown so much in the last year or so, and it we can attribute it to IDC, her docs, and GOD for Kylie being such a blessing to us all and how she has touched so many hearts. 

We are grateful you stopped by Kylie's page, and would love if you could make a donation on behalf of Kylie and all the children and families that the Britain Center supports!

Donating through this website is simple, fast and totally secure. It is also the most efficient way to support my fundraising efforts.

Many thanks for your support -- and don't forget to forward this to anyone who you think might want to donate too!

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