Warm HUGS sought for ailing boys

Lisa Petrocelli, a parishioner at St. Francis de Sales Church in Loudonville, has issued a blanket challenge: She needs people to knit, crochet, quilt or sew 40 blue-and-white blankets by the end of June.

The appeal began when Lynda Sedefian, a member of the Barths Syndrome Foundation and mother of a boy with the disorder, contacted Mrs. Petrocelli and told her that the Barths Syndrome group will soon gather for their biennial conference and that approximately 40 teenage boys are in need of blankets.

Barths Syndrome is a rare, genetic disorder that affects males. The symptoms include a weakness in the immune system that places a boy at increased risk of serious infections, heart muscle weakness, general fatigue and growth retardation.

Blue brothers

Mrs. Petrocelli was contacted because she is a member of HUGS -- Handcrafters Unite Giving Security -- a group that has been sewing blankets for years.

"The blankets help the boys identify with each other," said Paula Ginder, coordinator of HUGS. "Having light blue-and-white blankets, which are the colors of the Barths Syndrome Foundation, helps them realize that they are not alone, that there are others who suffer like them."

HUGS "began in an odd way," she explained. "In 1998, I saw an article in a magazine asking for volunteer help in sewing blankets for needy children. The article highlighted a group called Project Linus, a national, non-profit organization whose volunteers raised money for needy children. At that time, they were looking for people who crocheted or knitted. I was very moved by the story. I decided to call them because I had a lot of extra yarn around the house and thought they might be able to use it."

Drafted to help

When she called, Ms. Ginder was told that the group was being inundated with calls and could not handle the volume. Before she knew it, she was coordinator for Project Linus' New York volunteers. Within six months, she had recruited 100 volunteers who were busy crocheting, knitting and sewing a total of 1,000 blankets.

In 1999, when Project Linus ceased, she and her volunteers wanted to keep on, so they formed HUGS. Today, 400 HUGS volunteers make blankets for various children's causes, including the Barths Syndrome organization.

"We sew blankets for children that need them, such as hospital neo-natal and pediatric units, AIDS facilities, and orphanages," Ms. Ginder said.

So far, the volunteers have contributed nearly 6,000 home-made blankets to children in need of a warm HUG.

(The Barths Syndrome group requests that blankets be light blue and white, and measure 50" x 70" to fit teen boys. They can be crocheted, knitted, sewn as a fleece blanket or quilted. The HUGS group also accepts blankets in other colors for other needy children. Call Lisa Petrocelli at 482-1914 or email [email protected]. For information on Barths Syndrome, go to www.barthsyndrome.org.)

"In 1989, I lost my 18-month-old son to Barths Syndrome. Since then I have been working with the group to increase awareness of this disorder. The blankets are a symbol to our boys of their identity. We wanted to let them know that they are not alone in their illness, and the blankets connect them, especially when we gather every two years at our conference. Only 60 boys world-wide have registered with our foundation, but we know there are more who suffer with this disorder. With treatment, they can live a near-normal life. Without it, they will most likely die very young.'

Lynda Sedefian, Altamont

(6/3/04)