Katy was diagnosed correctly with Rett Syndrome at age 6. Katy is a fraternal twin (non RS).
Katy is our hero! She is a fighter! Katy is a very strong petite girl. Katy is generally very happy, giggly, anxious and silly. Katy smiles a lot, her smile melts any troubles right away. She has a peace about her hugs like no other and when she looks at you, she says so much!
Katy is mobile and she can speak. She talks randomly. She likes to say each of her 3 sisters names, bye bye, Daddy, Sage (her dog) and "brush your teef" (teeth)..I always love that one! She sometimes calls me "teacher" (I homeschool her and her twin). I'm very hopeful for the day I will hear her say "Mommy or Mommy I love you", like she used to. Katy stopped talking at age 4.
Katy loves water, music, "recess", she loves to look out her favorite door every morning and look at the tall trees, her dog, and the squirrels. She LOVES ATV rides..giggles the whole time! Katy likes to dance and play with her toys (the best she can with her arm in a immobilizer so she can't hit her mouth constantly or chew her other hand) and snuggle with her stuffed animals.
Katy is very social. She loves family gatherings, she gets soo excited! She just wants to be a part of everything. Katy loves to eat! (her metabolism is so high from the constant demands Rett Syndrome puts on her little body). She loves pizza, white rice, pasta, fruits and veggies.
I said Katy is happy, but she does cry and it's for a reason. Its when she's frustrated, scared, pain, and like she's "losing" something. I will never forget the first time her legs STOPPED working. Katy and I were leaving her cousins bday party two years ago and right there in the middle of crossing the street, she just stopped..couldn't move. She looked down at her legs as if to say "what's wrong with you guys? why aren't you moving?" She is very in tune and aware. Her and I both cried right then and there. After a few very scary moments, she recovered, this still happens randomly since that day.
Katy receives PT and Speech therapy through our Public School system. She loves seeing her friends and teachers. Katy is very popular and I think she knows it! :) Katy went to Public School up until 5th grade. We have been blessed with a wonderful PT therapist who has gotten Katy all her equipment to enhance her abilities and her quality of life.
Katy is always compliant and works very hard to help herself. She still helps with her arms while getting dressed. She has determination!
We truly believe that Katy is a rare and precious gift that God has thoroughly equipped us for. Though, it is not easy and some days the hope meter can get low, we STAY ENCOURAGED & ALWAYS HOPEFUL! We CHERISH every day we have with Katy. We are so thankful for her fun loving spirit, she's very humorous and makes us all laugh a lot! We learn every day through her.
We are very happy to share Katy's story with you and ask that God blesses you richly! WE HAVE HOPE! WE HAVE TO DO ALL WE CAN TO RAISE AWARENESS AND SUPPORT RETT SYNDROME RESEARCH FOR A CURE FOR OUR GIRLS!!
Romans 8:28
And we KNOW that ALL things work together for GOOD to those who LOVE GOD, to those who are called according to HIS PURPOSE!