Reagan was born on February 24, 2008 and was a happy and healthy. She hit her milestones within normal range for the first 10 months, but it was always on the later side of the range. It was around 10 months that we started to notice that she was not hitting milestones that quickly but mostly that she seemed to have no interest in stacking objects or putting things in and taking them out. We worked so hard on getting her to learn to play with her toy stacker but she would just get frustrated.
We talked to her Pediatrician at 12 months because she was also not walking independently. At this point she was saying about 3 – 5 “words”. He was not overly concerned and dismissed our fears. But as a parent, you can not ignore the ball of fear in your stomach. We spoke to a new Pediatrician at her 15 month visit because she had only just begun taking steps. She asked us if Reagan could follow simple one-step instructions, made hand gestures like waving, said words (she lost her words at 14 months), mimicked behaviors, etc. All of these answers were a no and we then realized that there was a big problem. We then began Early Childhood Intervention for Speech, Occupational and Physical Therapy. Reagan started a preschool for special needs children through our school district when she turned 3 years old. She loves the school environment and interaction with other children.
We found out a month before her 2nd birthday that she had Rett Syndrome. The news was devastating for our family as we read online of how it would change our daughter’s life. It was shortly after her diagnosis that she lost almost all purposeful use of her hands, including feeding herself. She does not say any words and rarely babbles but she has the most beautiful smile and a giggle that warms everyone’s heart. We long to hear her tell us the things that make her happy, or just a simple Mommy or Daddy. We are on a mission to fight Rett Syndrome and give back to our daughter the things that it has stolen from her! You can visit Reagan’s blog at
www.reagan-haley.blogspot.com to follow her journey with Rett Syndrome.
Many thanks for your support.