Age: 13 yrs
Parents: Julie & Richard Hackel

On Feb. 12th 1996 Megan Elizabeth joined our family. We were so excited to have a little girl. She was the cutest, happiest and good-natured baby we had ever seen! Things seemed normal for some time; she sat up at 10 months, but didn’t walk until 18 months. She could say Mommy, Daddy, baby. We even have a video of her saying “baby” and pointing to a photo of her and then pointing to herself, as she sat in the sink of our bathroom. ☺ But around 16 months we noticed that she didn’t get into anything and she stopped holding her “dolly”.

We had her evaluated and she ran through so many tests to try and figure out what was going on. It was a very hard time in our life. We were told that she was severely retarded and autistic and at the level of a 3 month old, at the time she was 2 ½. She started attending a day program for children with disabilities and one of the teachers ran across some literature describing Rett syndrome. We were floored. It described her exactly. We met another family in town that had a daughter with Rett syndrome and they confirmed our worst fear, she had it. That was tough to swallow, but over time we came to accept it. All the while we had fallen in love with our little Angel!

Megan, is soon to be 13, and is truly a joy to this family and everyone that she meets! She currently can walk with a gait belt, she has seizures, which are mostly controlled with medication, she also has scoliosis, which is progressively getting worse and may need surgery, but we are praying that she will not need it. Her main disability is Apraxia, the inability for the body to do what the brain wants it to do. Therefore, we do basically everything for her. She communicates with picture symbols as to her basic needs, but mostly with her eyes. Because I (Julie) spend so much time with her it’s as if I can see inside her as she has a look that just touches your soul! At times when asked if she loves you, she will slowly close her eyes to say yes! And we just melt. Megan loves being talked to and enjoys watching people and videos, and music, James Taylor is her favorite. She loves going on outings to the mall, eating lunch, watching movies, and swimming or just going for walks. She is also the biggest flirt with good-looking men that I have ever seen, just ask our friend Rob. I think I know where she gets it! She is a very content and happy young lady that does her fair share of laughing, which is so contagious. She also has a heart for those that are worse off than her. She has had several classmates over the years that she would constantly watch and walk up to and kiss.
 
Megan, this toast is to you. We are so blessed to have you as part of our family. You have taught us how to truly Love, to enjoy the simple things in life and to thank God for what we have and to trust God for what we need. You are so patient with us and never complain as we try to figure out what you need, and while we get your dinner ready. We enjoy fighting over who gets to hold you on the couch or helping you get to sleep. We thank you for allowing us to give you hundred’s of kisses each day, and we don’t care what anyone thinks, as you are precious to us! As the James Taylor song goes: “How sweet it is to be loved by you!” We thank all our friends and family for all your prayers and support over the years. We just now ask that you help us in the battle to find a cure for Rett Syndrome by making a donation.



Donate Now in Megan's Name

Megan's Coffee Cup!












Donations to Date: $195