My Story

My friend asked me to join her in running the 2019 Disney Princess Half marathon for our daughters who both have Rett. Neither of us are runners, and I thought the idea of running was a bit crazy especially for me at age 58. On second thought, I decided to challenge myself as I regularly ask my daughter to stretch beyond her perceived limitations.  I reluctantly said yes and began my training this past August. My training has been filled with struggles, setbacks, accomplishments and rewards, similar to life with Rett, but on a much smaller scale.

My daughter Sophie is currently 20 years old and received her first talking device at age 14. Together we have been working tirelessly to find ways for her communicate beyond the basic needs and wants. Imagine adding reading and writing at the same time. This is a lot to figure out.  In 2015, I took several on-line courses through Rett University and had Sophie meet directly with Rett University communication and reading specialist, Susan Norwell. This work inspired us to believe that Sophie is truly capable of learning to read and write despite all the challenges that Rett Syndrome puts on her body. Sophie is approaching her final months of being in the school system and is just starting to make big gains in her communication efforts, making the support and work of Rett University super important to us.

In addition to supporting Rett University, GP2C funds Rett research. I truly believe hope is on the horizon with so many researchers working to cure Rett. My dream for Sophie is to reverse all Rett symptoms, ultimately giving her independence from a body that currently holds her captive both physically and emotionally.

Please consider donating to this amazing non-profit and know that your gift can make a huge impact to families worldwide. Thank you for any support that you can offer.