Join us on Sunday, June 25, 2017 as we come together for the 7th annual Race for Rylie event; an event to benefit the Pitt Hopkins Research Foundation.
To register or find out more information, please visit: http://raceforrylie.myevent.com
5K Race, Kid Fun Run, Noncompetitive Walk
Meet our RYLIE! We are Jack and Heather Maginn of Coopersburg, PA – two very proud parents of a growing girl who has the biggest smile, silliest laugh, and the sweetest personality. She was diagnosed with Pitt Hopkins Syndrome when she was just 6 months old. Was it always easy? NO! From the beginning there were NICU stays, diagnosed hearing loss, heart concerns, vision problems, and more specialists than I’ve ever seen in my lifetime! We spent most of her first three years attending physical, occupational, feeding, hearing, vision, and speech therapies.
But look…it’s not all doom and gloom. Not even close! Are we on a different path to parenting than most people we know? YES! Our path is unique. We’ve had to revise our hopes and dreams for Rylie. We have learned a LOT on this path…things I KNOW we would not have learned on the path more traveled. Rylie has taught us to accept others rather than judge them, to have patience even in turmoil, to stay strong even when we feel weak, to enjoy the simple pleasures that life has to offer, and that miracles happen every day.
It took some time to accept her diagnosis but we’ve been on this journey for eight years now. It’s impossible to be so sad around someone so happy. Rylie is showing interest in walking and beginning to take reciprocal steps with two hands held. She is beginning to communicate with her communication board. She plays miracle league baseball with her sister and enjoys wagon rides with her brother. She loves books, swimming, swinging, music, dancing and riding her bike. We are very proud of her achievements!
We hope you are able to meet Rylie on June 25th as we FIGHT for miracles!
Heather and Jack Maginn