Charles Cook is dressed and ready to depart his College Park home while it is still dark in the morning. But unlike many other business people, Cook is often not in a suit and tie; he is instead dressed in a “kit”—a shirt and tight, padded matching shorts in bold, fun patterns typically seen on […]
“Blair was a force. Her unbounded personality was her super power. Her voice could melt hearts. Her brown eyes were limitless.”
Roger Chapin spoke those beautiful words describing his daughter, one of College Park’s most well-known and well-loved children, at the recent memorial service celebrating her life.
In a sanctuary where more than 750 solemn people sat shoulder to shoulder and an overflow crowd stood in the back, a heartsick community bid farewell to Blair Elizabeth Chapin, who died April 4. In the pews were family members, friends, dignitaries, elderly people and many children.
Blair lived only 15 years, having fought the rare genetic disease Sanfilippo syndrome since birth. Yet, her life and the grace with which her family dealt with their remarkable and crushing experience touched thousands across the country.
The family has received cards, notes, text messages, emails, and good wishes “from friends and strangers,” Roger said.
“The outpouring of support reminded us how many people followed our family journey with Blair and that so many were deeply touched by her life. We are extremely blessed to have so many loving people in our life,” he said.
In his poignant and eloquent remarks at the memorial service, Roger spoke directly to his remarkable daughter Grey, Blair’s younger sister: “Grey, because of Blair, you have had to grow up faster. You are much more independent than you might have been otherwise. You have empathy for others that only those who have experienced a sibling with special needs can understand.”
“Grey, you are loved and we are blessed by you every day. Blair was so fortunate to have you as a sister,” he said.
Roger also spoke directly to his wife, Susan Chapin, thanking her for the determination and intentional living that helped light begin to enter their lives once again after Blair’s diagnosis at age 6 plunged them into the darkness of unspeakable grief.
“Blair’s doctors, nurses, and in her final days, her Hospice team, revealed to me they have never witnessed a child more cared for or more loved by a mother,” Roger said. “What Susan gave to Blair was nothing short of PERFECTION.”
Composed and poised, Grey spoke at the memorial service. She told of losing not only her sister but her best friend. “Though she was different, to me she was always just my big sister.”
Grey created the Purple Lemonade Stand for Courage to raise funds for research, and the lemonade stands became a popular activity in schools and churches, with Blair always close by being greeted by the guests.
“What I realize now is that in a way, Blair was on a mission,” Grey said. “She was on a mission to make everyone around her smile, to change the lives of everyone that she met for the better; she was on a mission to inspire.”
The Chapins created a loving home environment as their girls grew up, full of fun and excitement like any young family, as evidenced by the video shown at Blair’s service. Photos portray Blair learning to ride a bike. Dozens show Blair and Grey on the beach or boating on the west coast. Videos document people who participated in “Sing for Blair,” one of the creative ways the Chapins made homelife joyful for their daughter while raising funds for research.
Celebrities, local musicians and her family sang to Blair, who loved music and the children’s PBS show “Barney & Friends.”
Blair’s journey was shared by Susan and Roger’s extended families — Susan’s parents, Sue and Jerry Chicone, and Roger’s parents, Bruce and Linda Chapin.
“They showed us, through their own experiences and grace, how to adjust to the darkness,” Roger said.
Linda Chapin, who served as Orange County’s first mayor, said, “Our hearts were broken twice: once when Blair was diagnosed and again when she left us. But in between, Blair and her parents and her sister taught us how to live. They showed us how to face the future with courage but to treasure every good day.”
No cure exists for Sanfilippo syndrome, but “the family is confident someday a cure will exist.” As Roger explained, when Blair was diagnosed, “We inherited ANOTHER family all together, our new Sanfilippo family. Parents who came before us with older children who were valiantly in the fight. Then later those families with younger children who would seek our council just as we did before.”
Several families and their children with Sanfilippo syndrome traveled from around the country to celebrate Blair’s life.
“Without ever meeting before, or speaking a word, we could embrace each other, cry together, and hold each other’s children tight. Simply put, we share an unimaginable bond,” Roger said.
Grey closed her remarks with inspiration for all who attended the memorial service. “So whenever you’re having a bad day or going through something difficult, always remember Blair.”
To learn more, visit www.TheBlairBanner.org.