Friday, November 4, 2011

living to 72


In every non-biological way, Jackie Pepin was a little girl.

She dressed her baby dolls each morning at a group home for people with developmental disabilities.

She adored cheap watches and was proud of her ability to tell time.

She enjoyed coloring books and walking a cockapoo she had named Happy.

Chronologically, however, Ms. Pepin stood out for her advanced age, having lived a dozen years past the average life expectancy for people with Down syndrome.

Ms. Pepin died Saturday at Brandon Regional Hospital, a possible result of blood clotting and other circulatory problems, her family said.

She was 72.

"She was a 5-year-old child in the body of a 72-year-old lady," said her sister, Joan Krowitz.

Without trying, Ms. Pepin spread her satisfaction in simple pleasures to those around her.

Waitresses delivered her regular breakfast without having to take the order: two eggs and sausage, two cups of coffee and white toast. Strangers at the dollar store wanted to buy trinkets for the bright-eyed woman who stood 4 feet 8.

Ms. Pepin was one of more than 400,000 people in the United States born with an extra copy of chromosome 21, resulting in Down syndrome.

As recently as 1983, life expectancy for those with Down syndrome stood at 25, but advances since in surgery and medications have boosted that estimate to 60, according to the National Down Syndrome Society. The oldest living person with the syndrome, Guinness World Records reported in 2009, is Bert Holbrook of Waseca, Minn., who is now in his early 80s.

A stimulating home environment, good health care and family support contribute to longer lives. Ms. Pepin had all of those things, as well something many adults lack: an ability to meet nearly all of her needs.

Among them were the extra napkins she always requested at restaurants, The Catholic Channel, Jeopardy and Wheel of Fortune, even though she could not read.

She enjoyed dancing, especially to her favorite song, Fat Bottomed Girls, by Queen.

Ms. Pepin grew up in Trumbull, Conn., during an era of little hope for Down syndrome children.

"When she was born, the doctor said, 'Institutionalize her — or don't worry about it, because she'll be dead by the time she's 15,' " said Richard Lilliston, the chief executive of Hillsborough Achievement and Resource Centers, which runs the home where Ms. Pepin lived on weekdays.

She interacted with other developmentally disabled people in Connecticut and South Carolina before moving with her mother to the Tampa Bay area in 2000.

She worked at a day program and earned a few dollars a week until her arthritis advanced. The group home gave her a domestic structure. She dressed her baby dolls each day and changed them into pajamas at night and put them to bed.

"It was her motherly instinct," said Krowitz, 76.

She had a friendship with a resident named Tommy. They called each other boyfriend and girlfriend.

She had a disarming way of admitting mistakes.

"I'd ask her, 'Why did you do that?' " her sister said. "She would say, 'I don't know, Joanie. I lost my head.' "

At the hospital, someone asked Tommy why he was crying, Krowitz said.

"He said, 'Because I miss Jackie so much.' "

So do many others, including family members who are traveling to Connecticut from several other states to her funeral.

"Although she was handicapped, she gave us so much more than most people give in their lifetimes," Krowitz said.