Family Interaction -What Really Matters!

Family Interaction -What Really Matters!

20130420_131053Johnson -SliwkaMaddie & Family

Over the past week I have had the privilege to interact in person with 3 AHC families in different settings. It was a thrill to see Josh at the 1st Annual CureAHC Tennis Round Robin in Atlanta. His mom Jenny Hudock Toney is on our board. She did an AMAZING job putting together the successful event!. It was great to see her husband Nick again (the family had traveled to Raleigh last year for our 5K/Walk), and a real treat to meet Michael Renfroe, Josh’s biological father along with Josh’s extended family and large circle of supporters.  Josh had a GREAT day during the event! I even caught some video of him shooting a basket on the basketball court!

Renee & I welcomed the opportunity to see some friends we had made at the Raleigh AHC Family Meeting in 2011. Ben Johnson & Katrina Sliwka met us for dinner after their visit to the AHC Clinic at Duke Children’s Hospital.  My how their daughter Delaney has grown! It was also great to meet Mara for the first time (Katrina was nearly due to give birth to Mara when we first met in person). Stay tuned for a blog post from them about their experiences.

The next day I had the chance to come back to Duke to meet a newly diagnosed family from South Carolina. It was great to get the chance to have lunch with them. They are a wonderful family and Maddie is a doll. They are passionate about advocacy and excited that so much is underway on the journey to cure AHC. I am grateful to have met them in person. I’ve been reflecting on the experience Renee & I had when Matthew was first diagnosed, and the promise we made to each other that as much as we possibly could, we would strive to make sure no family ever again felt isolated, alone, and without hope like we experienced.  That is one of many reasons why Cure AHC exists, perhaps even the most important. Research of course is critical, raising awareness is a must, facilitating collaborations and finding funds is essential, but at the end of the day, what really matters is that families feel empowered to provide their child who suffers from Alternating Hemiplegia of Childhood the best possible future, and that they have hope for that future. As I told Tisha Powell at WTVD 11 in our recent interview, “to make a difference here (for families) is probably one of the most rewarding things I’ve ever done.”

Looking forward to more of “what really matters” – more interactions with more AHC families!

 

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