Ryley's Page

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Ryley's Story

Ryley is a happy fun loving beautiful little 3 yo girl! She developed normally until about 12-18 months then started to regress. My baby who was perfect and slept with no assistance turned into a baby that would cry inconsolably and started having insomnia. Where once we would hear momma and dadda we no longer heard anything but screaming. Doctors tried to convince us she was autistic but I refused to believe it because she was so loving. We had Ryley screened for Early intervention around 18 months. She was drastically behind in all developmental areas. Twice a week she started receiving speech, OT, and going to a special education school. When she turned 33 months she was put into a different classroom at her school and started seeing new speech and OT teachers. The speech teacher and I were discussing new strategies to try when he mentioned Rett Syndrome to me. I left school and decided to look into Retts. It was a blessing in disguise, what absolutely crushed me for a couple weeks prepared me for the diagnosis 6 weeks later. Finally 2 months later we got into our appointment to the developmental specialist. 6 weeks later, 20 days before her 3 Rd birthday we received the results from her genetic testing...Rett Syndrome. Thanks to speaking with her speech teacher I was more prepared to hear this. My brain was ready to do as much possible for our daughter. About a week later while looking for these organizations to help in our journey, I had a complete break down. Suddenly the realization of our journey ahead hit me full force and thoughts of losing my daughter killed me. I kept joining as many groups possible. My advice is find that one mother that can help you. I found a grandmother who doesn't know us or vise versa. She helped me through some of the hardest times in the beginning stages, she gave me piece of mind and wisdom that allowed me to breath. Ryley is going on 4 now, we are almost through our first year. She attends school 3 days a week. She receives speech, PT, and OT three times a week. We recently have started thickened liquids due to aspiration. She has very minimal hand use and is starting with the eye gaze computer. She is a very happy little girl that has shown us many things through a different view than most. She loves Dora, enjoys having books read to her, snuggling our family dog and being outside. Ryley will forever be our Silent Angel!