June 13 – Day 1: Beantown to Providence, RI: What a Day!

We had the perfect day today! The weather was a bit chilly at first, but then it turned cool and sunny, and we had a favorable wind most of the day. The start was very special as we departed from Ara Parseghian’s home in the Boston area. Ara is the grandson of Coach Ara Parseghian, one of Notre Dame’s most successful football coaches; the son of Cindy and Mike Parseghian; and the brother of Michael, Marcia and Christa, whose diagnosis with NPC led to the creation of the Ara Parseghian Medical Research Foundation and who still inspire our efforts. Getting to know Ara and his wife Cicely was such a pleasure, and it was very special to have Ara bike with us on this first leg. He’s a strong biker and runner – he finished the Boston Marathon this year. Wow, what an accomplishment! What a privilege to have him as part of our ride. We left Ara and Cicely’s home around 9 a.m. and arrived in Providence around 1 p.m. Apart from a detour in Pawtucket, Rhode Island, the day was flawless. Thank you, Ara, for riding with us – we really enjoyed being with you.

Ara Parseghian, grandson of former head coach Ara Parseghian, rode with us for the start of our ride in Boston.

In Providence, we had lunch with George Duke from the Notre Dame Development Office. George arranged for us to meet with Dr. Bill (Notre Dame ’62 alum and neonatal doc at Brown Medical School), along with Rhonda and Holly, whose children succumbed to NPC. It was wonderful to meet these mothers. Holly spoke about Erin – her life, her love for her family and her fantastic smile. Rhonda told us about Graham – his outgoing attitude and energy. She joked that Graham especially liked blonde health care professionals. They both spoke so highly of the Ara Parseghian Medical Research Foundation and what it meant to them, providing hope and a network for meeting others with NPC children. Both Rhonda and Holly showed us pictures – scrapbooks full of memories of their children’s short lives. We were so fortunate to meet them and to hear about Erin and Graham. Thank you, Rhonda and Holly, for meeting with us and sharing with us your stories, and thank you, Dr. Bill, for giving us your time and helping arrange the meetings.

Holly, Rhonda and Dr. Bill (class of '62) are with us.

After lunch, we were on to Wickford, Rhode Island, to meet another NPC family, Deb and Bob. Bob was so enthusiastic about the ride that he arranged for a police escort all the way from North Kingston into Wickford. Officer Nick led the way. He asked us how fast we would like to go, and we told him about 15-16 mph. His speedometer must have been off, as we were trailing him at speeds above 20 mph for most of the five miles! What a way to travel, with sirens blaring at each intersection. Boy, did we have a fast five miles (Lance Armstrong would be envious). Thanks, Officer Nick!

Police escort through town

We arrived at Deb and Bob’s shop, where a crowd of folks welcomed us – some of our relatives, some Notre Dame alumni in the area, and children, grandchildren and friends of Bob and Deb, along with the newspaper reporters. What a wonderful reception – we were so appreciative of their willingness to greet us with open arms. Bob and Deb’s child with NPC, Scott, was a twin to Tiffany and brother to Brent. Scott succumbed to Niemann-Pick Type C several years ago. Tiffany is now married with two small and very active children. As we rode in, we saw Scott’s picture on a poster with the words “A Goal for Life,” a slogan coined by the Ara Parseghian Medical Research Foundation. We heard so many stories about Scott and his life. Deb told us his condition was misdiagnosed for years, until they saw Cindy and Mike Parseghian in the media, and she became convinced that Scott had NPC, which the doctors subsequently confirmed. We wish to thank Deb and Bob for their warm hospitality, their wonderful welcome, and all of their support for the ride.

Bob, an NPC parent, signs the van with his granddaughter.

Signing the van

It’s been a wonderful day. The families have been so forthcoming and welcoming. That’s where we get our energy to keep going.

1 Comment so far

  1.    Maureen McFadden on June 14th, 2011

    Way to go Greg and Renate!