Piper's Story

Our daughter Piper was born a beautiful "normal baby girl". She was developing normally, so I thought...  She had about 5 words that she could say.  She could also sit up and use her hands to play and feed herself, but after about 7 months of not progressing past that and she never developed the skill to crawl or walk. started also began to lose the use of her hands and her balance to sit.  One day I remember sitting on the floor and playing with her when she just fell backwards and hit her head on the hardwood floor.  we were baffled at the lack of fear and the absence of protection that one would have to catch themselves from falling.  I already knew something wasn't quite right since she was loosing the skills to even feed herself anymore.  SO we called the Doctor and begged that they see Piper to just tell me what was happening was "OK".  even though I knew it wasn't.  

After a few months, Doctors appointments, genetic testing and countless labs, our worst fear was confirmed, Piper did in fact have Rett Syndrome.   

Fast forward.  Now Piper is 13 years old and she is still my happy, vibrant girl.  Yes, she has a ton of extra needs and will forever need 24/7 care but she has taught me so much and put me in contact with wonderful families that I would have never known.  Families that know what its like to cry every day but put a smile on, to struggle but fight through the pain because our girls and boys need us! 

After being associated with many fundraisers for "The Cure". It was quite evident that some of the immediate needs of families were not being met. My husband and I along with our amazing family and friends decided to take it upon ourselves to help local families that were going though the same things that we had been through.  After much generosity was shown to us when we were navigating through Piper's disability and what her future would hold, we now gather funds though various means to help raise money for not only local families, but also Rett syndrome treatments and a potential cure for this debilitating disorder.