Friends Group Helps Families of Dying Children
Julie Waresh
June 06, 2005

Palm Beach Post Staff Writer

Ellen Kaplan-Crawford, a mother, lawyer and former labor and delivery nurse who lives west of Boynton Beach, is assembling a small army.

The troops she's recruiting call themselves the Friends of Spencer Crawford — named for her son, who was born in 2000 with a congenital heart defect.

It's a group that aims to offer the kind of help to families of children with life-threatening conditions that the Crawfords needed but couldn't find.

Spencer, who had three open-heart surgeries, including a heart transplant at 11 weeks, died in 2002, two months shy of his second birthday.

His mother, who is also mom to Kyle, 6, and Sylvie, 1, is determined to help make daily life a little easier for families with critically ill children.

"We want to ease the burden," said Kaplan-Crawford, whose husband, Christopher Crawford, is a detective with the Boynton Beach police.

The Crawfords want to share what they learned about handling necessary personal, household and financial responsibilities at a time when those things seem unimportant.

For example, when Spencer was being transported to a St. Petersburg hospital for a heart transplant, the ambulance driver demanded $1,100 on the spot.

A distraught Kaplan-Crawford did what any parent would do she handed over her credit card.

"I later learned there are companies that would have flown Spencer for free," said Kaplan-Crawford, who held the inaugural meeting of the Friends a few weeks ago.

The group is launching its Share the Care program, which is designed to organize a family's network of friends and supporters and assign them specific tasks.

Often parents are overwhelmed and are either uncomfortable asking for help or don't have the presence of mind to communicate what they need.

"We'll do the leg work," Kaplan-Crawford said.

That includes arranging for the types of services medical insurance typically does not cover but that go a long way toward helping frazzled caregivers.

Among them: lawn care and house cleaning; family hair cuts; grocery shopping; respite care and in-home counseling for the entire family, including siblings who are sometimes overlooked.

Kaplan-Crawford said she also concluded that the hospice model, which offers end-of-life care for adults, does not work for children.

"Once you join hospice, you give up all aggressive therapy," she said. "No parent is going to give up hope on their child until that child takes their last breath."

Boynton Beach pediatrician Dr. Edward Kris is the group's medical adviser and is distributing its newly printed brochure to fellow pediatricians.

Kaplan-Crawford, meanwhile, is an adviser to the state's Pediatric Palliative Care Project and serves as its Palm Beach County chairman.

The fledgling Friends group drew about 40 people, including a psychologist and and acupuncturist, to its first meeting held in Broward County. The group plans to gather periodically at sites throughout South Florida.

Its services are free — that's why Kaplan-Crawford is working to build that army of people willing to donate time, money or anything else that might help.

For information, visit www.spencercrawford.org or contact Kaplan-Crawford at ellen@spencercrawford.org.

Julie Waresh is a staff writer for Neighborhood Post. She can be reached at 561-820-3472. Faxes can be sent to 561-265-4872.