By Rick Slater, Wichita KS.

Our eldest granddaughter, Carlie, was diagnosed within her first year as being afflicted with Phelan-McDermid Syndrome and as a family we undertook to learn as much as possible about both the disorder and what we could do to help Carlie manage the many difficulties we knew she would face.  The luckiest thing for Carlie was having parents who are lovingly fully committed to do whatever it takes to make her life as full and meaningful as possible.

Now, at 15 years of age, Carlie loves going to school and with the assistance of so many dedicated teachers, paras and administrators leads a fulfilling and happy life. As a grandparent, we can be supportive and loving, but her family, including three gifted typical siblings, make Carlie’s world one so many with a child with PMS well understands – the gift of such a joyous, boundless heart of love and the many challenges normal children do not face.

A year ago, I faced my own challenge when learning of an electrical dysfunction in my heart, resulting in an immediate pacemaker insertion and full restrictions from the things I enjoyed doing the most – playing golf and working out at the local Y. My cardiologist said I could walk and ride a bicycle, both of which I undertook with great vigor and I fell in love with cycling, riding longer distances each week. I soon learned about an annual event called Bike Across Kansas (BAK), celebrating its 45th year this year. The ride is from the Colorado border to the Missouri border, this year covering 503 miles over 8 days with 800+ riders.

As I trained at longer distances, working up to 76 miles, I often thought of Carlie and how she would never have the opportunity to experience something like this. It was both humbling and energizing as I often would say out loud “Talk to me Carlie” if I was having a bad stretch or thinking I was in any discomfort. It always brought me back to my reality of being so lucky, both to be able to do the things I do, but to have her in our lives, as well.

So, as a bit of an incentive to ensure a full commitment to the ride, and as a benefit to the Phelan-McDermid Syndrome Foundation, I posted a page on Facebook asking friends to consider pledging an amount per mile of my ride and donating that amount to PMSF in Carlie’s name. The ride was last week and was one of the tougher weeks for this ride from a weather, wind and terrain perspective. Believe me, Kansas IS NOT flat.  But it was a wonderful experience and the knowledge of the donations always gave me an extra push, even on the longest days of 75 to 85 miles.

Now the donations are flowing to the Foundation and pleasantly, some of the donors even pledging $1 per mile for the 500 miles. Suffice it to say when I ask Carlie to “talk to me” it is with great pride and joy that I push onward; as I know all those connected with the Foundation will push onward until the joyous day when a cure or treatment will be found to give some of the normalcy we all enjoy to our loving and loved Phelan-McDermid stricken family members.

I believe I will ride the BAK again next year, carrying Carlie in my heart and hopefully generating more funds for the Foundation.