July 3 – Day 21: West Helena to Pine Bluff Arkansas

Today was a long day – over 105 miles across flat land – and very hot, with temperatures above 100 degrees by day’s end. To avoid as much of the heat as possible, we started very early, putting all of our reflectors and lights on our bikes and bodies in the predawn darkness. Getting to watch the phenomenal sunrise was a great reward for the early rising. As the heat kicked in, we drank a lot of water to stay hydrated.

The early morning get-up: lights and reflectors and the whole shebang

Beautiful sunrise

Marriage is all about sharing

We saw a lot of water mirages on the road today. Also, we could have been in Indiana for it was very, very flat and there was lots of corn – corn as far as the eye could see! We also kept seeing these beautiful white birds in the rice fields.

White bird

Our route took us from West Helena to Pine Bluff (right outside of Little Rock) and it was mostly farmland in between – we encountered small communities and an old fire truck in Swan Lake. The heat was tough: we averaged 18 miles an hour the first hour or two, and by noon 15 miles an hour was pushing it. A pit bull chased us for a bit, but he was as tired as we were so after about a quarter of a mile he lost interest. He seemed like a friendly one anyway. Renate believes she saw her first alligator in the wild, but it was not confirmed. We arrived in Pine Bluff around 1 p.m. today.

An old fire truck

Our transitory pursuer

Mind the cautionary sign atop the door

Renate's Paparazzi

Pine Bluff Boat

This evening we met an NPC family in Little Rock – Janice, Richard, and Judy (Richard’s sister). They talked about their son, Jon D., who was diagnosed with NPC when he was 5 and died at the age of 23. Jon D. was easy to get along with and never had any harsh words for anyone. They told us that he was always a happy child. He loved blondes and the color purple. Janice and Richard shared with us their memory albums of Jon D. We saw photos of him in the midst of cheerleaders, holding the signed Arkansas Razorbacks national championship basketball, and there were also many photos of him with different politicians. One year, the children at Jon D.’s school wrote letters to Hillary Clinton soliciting funds for NPC research. We got to read these letters, and it was very touching to see all of Jon D.’s school friends writing on his behalf.

Judy, Richard, Janice, Greg, Renate, and Ally

There were a few passages from our conversations that stuck in our minds tonight. Richard told us about discussion with the doctors after the diagnosis: they said to him that there was no treatment or cure and nothing could be done. But Richard said: “Yes, there is something we can do. We can raise funds to support research on NPC.” And that they did. The family organized raffles, softball games, BBQ events, and so on. They funded a few researchers around the country to study NPC. Richard and Janice went on to discuss their deep appreciation for the work of Coach Parseghian, Cindy and Mike, and for the Foundation bringing together people and families to help each other out. They talked at length about the bonds made with other NPC families, and they told us that they thought of the NPC community as a large family. When they heard that a child succumbed to NPC, they felt the sorrow as if one of their own had passed on.

Jon D. had an impact on many – his schoolmates, the NPC community, his local community, politicians, his doctors, etc. Richard, Janice and Judy through their initiatives raised money and funded research on NPC. We had a wonderful evening with them, hearing stories about Jon D. and sharing stories other NPC families had shared with us.

Thank you, Richard, Janice and Judy for meeting with us tonight – we had a great time. Happy Birthday, Richard – we are very grateful that you met with us on your birthday. Thank you for thinking of Ally – she loves her Razerback t-shirt. Michaela, our older daughter, flew in this evening and was very pleased that a care package was awaiting her as well.

4 Comments so far

  1.    Cristin on July 5th, 2011

    Great job! Keep up the awesome travels and it’s good to know that there are so many people supporting such a worthwhile cause…the lives of all those affected with NPC disease. Hope you enjoy the last week of your trip and good luck!


  2.    Ara Parseghian on July 5th, 2011

    Keep up the great work. I can’t tell you how impressed I am every time I read your descriptions of your journey and how inspired I am by the pictures of you making your way across the country. Good luck as you roll through the south. I wish I was still with you in person, and I hope you know I’m with you in spirit.

  3.    Dale Nees on July 5th, 2011

    Greg and Renate,

    Hope you had a good 4th of July and were able to stop and enjoy a “little” time off. What a phenomonal accomplishment and for such a great cause. Our thoughts and prayers are with you as you continue to inspire and bring attention to this disease and finding the cure. Stay safe and feel free to bring Amy Grant back to ND with you.

    God Bless