Copyright 2005 The Times-Picayune Publishing Company
Times-Picayune (New Orleans)
May 22, 2005 Sunday
SECTION: METAIRIE PICAYUNE; Pg. 99
LENGTH: 892 words
HEADLINE: THAT’S WHAT FRIENDS ARE FOR;
Friends pray, stay togetherFighting for a cure, keeping love alive
BYLINE: By Melinda Blanchard, Contributing writer

This is a story about love and friendship. It began when Eleanor Ecuyer was diagnosed with amyotrophic lateral sclerosis, or Lou Gehrig’s disease, in September 2002.

Ecuyer and her friends all say they believe in miracles and are praying for one. Gathering at Ecuyer’s New Orleans home for a prayer group meeting every Monday afternoon, the friends who come from Mandeville, Old Metairie, New Orleans and Kenner offer encouragement and support to Ecuyer while they pray to the Virgin Mary, Blessed Francis Xavier Seelos and other special saints.

"We have adopted Blessed Seelos as our ALS patron," said Ecuyer, 58. "We pray for his help in finding a cure for ALS. That will be the miracle that makes him a saint.

"I pull great strength from praying with my friends. Seeing them every week gives me the force that I need to keep going."

According to the ALS Web site -- www.ALSAssociation.com -- ALS is a motor neuron disease that affects nerve cells in the brain and the spinal cord. With ALS, the ability of the brain to initiate and control muscle movement is lost. Patients in the later stages of the disease may become paralyzed. Right now, there is no known cure or treatment.

"ALS is hereditary in only a small percentage of families," said Kathy Larre, Ecuyer’s sister. "Eleanor has an uncommon type, referred to as ‘familial ALS.’ That means the gene was handed down by a member of our family. Two cousins on my father’s side died of ALS. Then, when our older sister, Marie, was diagnosed with ALS in 1994, it was determined that the gene was inherited from my father, who died in 1990 of spinal muscular atrophy. We know that was probably ALS. Marie died in 1996."

Patsy Massimini, Kathy Eastman and Ruth Stone agreed that the prayer group has made a difference in their lives.

"Being with Ely and being part of this group has slowly changed me," Massimini said. "I see things differently and realize every day is a gift."

"I had been away from the church for many years," said Stone, Ecuyer’s closest friend. "When we started the prayer group, I started to change. I could see the deep faith in all the women, especially Ely. It helped bring me back to the church."

"To be there for her each Monday and to be part of a loving, faith-based circle of friends is one of the blessings in my life," Eastman added.

Lorraine Saba, a longtime friend of Ecuyer’s, said, "The prayer group is so special because it gives me the opportunity to show Eleanor that I care about her and to show God that I believe he can heal her."

Marcelle Dinsdale and Sandra LeBlanc said the prayer time is relaxed and informal.

"We always start with the rosary," Dinsdale said.

"Many times we say our own prayers, expressing how we feel about Eleanor and how much we want her to get better," LeBlanc added.

Ecuyer’s friends lend their support in other ways as well. On any given day, you might find Carolyn Wisner dropping by with one of her special homemade soups. Marie Miller has planted tulips in the garden outside Ecuyer’s window, a place she spends most of her day.

Margy Ruli spends afternoons with Ecuyer when her caregiver, Que Henderson, is off. Billy Connick brings Holy Communion to Ecuyer. And Milton Retif drops by regularly with stories that make Ecuyer laugh.

"Eleanor has a strong faith," Retif said. "She’s unable to get to church, so Billy and I arranged Mass at her home.

The Rev. William F. Maestri, superintendent of schools and the director of communications for the Archdiocese of New Orleans, and the Rev. Byron Miller, executive director of the Seelos Center in New Orleans, alternate celebrating Mass for Ecuyer and the prayer group.

"As we gather around Eleanor to pray for a cure, there is a light in our midst and it’s the light of Eleanor’s smile," said Carolyn Diaz. "It is Eleanor’s way of expressing her beauty and grace she shares with all of us."

Adrienne Miller said she hopes others "will start prayer groups for someone they know is ill."

Although Ecuyer’s disease has taken a toll on her physically, she continues her daily routine such as dressing and maintaining her appearance with the help of Henderson.

"We don’t leave her room until it looks just right," Henderson said.

Ecuyer said the day she learned she had ALS was "the worst day of my life."

"Now I realize in one way, the disease was actually a blessing because I would have never known the depth of love and devotion of my family and friends," Ecuyer said. "My husband, Al, will never give up hope of a miracle."

Ecuyer and some members of the group played golf together for 20 years at the Metairie Country Club. Nancy Stokes and Pat Fabacher said sharing stories about Ecuyer is part of their therapy as well.

"None of us will ever forget the first time Ely made a hole in one," Stokes said.

"It was a tournament at the club, and it came as a complete surprise to Ely," Fabacher recalled.

"And you could hear her scream all over the course," Linda Able added.

Sue Wood said that although the prayer group was formed to pray for Ecuyer, it has become to mean much more.

"It is evident to me that God brought us all together so we could learn from Eleanor," Wood said. "She is an inspiration to all to carry on when times are difficult. And despite Eleanor’s circumstances, she shows great strength of character and faithfulness to God. And Eleanor shares all those things with us each time we enter her home."