Race for Rylie 2017 was a great success! We earned over $12,500 for the Pitt Hopkins Research Foundation. Thank you to all of the amazing fundraisers, participants, donors, sponsors, family members, friends, and other Pitt families who made it such a special day. I can’t thank you enough for the love and support you give Rylie and our entire family year after year as we continue to “fight for miracles”. We always count our many blessings on this day!

This year was the 7th annual Race for Rylie event, benefiting the Pitt Hopkins Research Foundation.

To 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!

Thank You,
Heather and Jack Maginn

This year’s T-shirt design!