On April 28, 2018, my life and my family's lives changed forever. That was the day that my daughter Paige was diagnosed with Rett Syndrome. We knew from watching her slowly lose her skills and become shut off from her surroundings that there was something developmentally different with Paige, but we could have never imagined the scope of what we were facing.
Rett Syndrome is a rare genetic disorder occuring in around 1 in 10,000 births, and almost entirely impacting girls. Children start developing normally, then between 6-18 months go through a regression where they lose many of the skills that they have gained. Most girls with Rett Syndrome will never walk or talk, have trouble feeding themselves and using their hands, have siezures, heart and breathing trouble, scoliosis, digestive issues, and many other medical issues that no child should have to experience.
Paige is now almost 4 years old. She has learned to walk for short periods, but cannot talk or use her hands to eat or play. She has her own neurologist, cardiologist, GI doctor, developmental pediatrician, 6+ therapists, and Rett specialist that she has to see. Despite everything that she has to work through, she is truly a happy, shining light for everyone that meets her! Though there is currently no cure for Rett, there are a few treatments in clinical trials, or preparing for trials.
And that's where we all can help!! I was chosen to run in the Boston Marathon on behalf of the Rett Syndrome Association of Massachussetts to raise money for funding the research and clinical trials that will someday save the lives of our girls with Rett. It's a difficult journey to train for a marathon, but looking at Paige and seeing her fighting spirit gives me motivation to do anything! I would sincerely appreciate any support that you could provide to meet my fundraising goal of $10,000. No donation is too small, and every little bit helps us get closer to treatments and a cure someday. As I write this, I just learned that one of our Rett angels passed away last night at the age of 46. Within the past two weeks, several others between the ages of 6 and 51 have gotten their wings.
Thank you so much for your support, either in the form of donations or encouragement, well wishes, training support, peanut butter sandwiches (the most perfect recovery food), ice baths, and hugs when I feel like it's too much. I truly appreciate everyone who has helped us through this journey so far. Your help is our hope.