Members of St. Matthew's parish in Voorheesville are rallying around a young parishioner with a rare nervous system disorder by hosting a fundraiser for medical research this weekend.
Proceeds from the event, "My Garden of Hope," will benefit Girl Power 2 Cure. The non-profit raises awareness and funds for Rett Syndrome, the most severe form of autism and the leading genetic cause of severe impairment in girls.
The free evening will feature a coffeehouse atmosphere with a talent show, a silent auction, raffles and opportunities to purchase quilt squares and paper flowers, which faith formation children will display on a floor-to-ceiling window in the parish hall to mimic a garden.
"It's a real parish-wide event," said Ellie Dorn, youth ministry coordinator at St. Matthew's. Teens will sell the quilt squares, and adults will assemble the quilt and later present it to Emily "Emmy" Draves, the 14-year-old parishioner who has Rett Syndrome.
Parish youth and adults, including Emmy's 10-year-old sister, Kelsey, will appear in the talent show. Parishioners have also donated baked goods and raffle prizes, which include an overnight trip to New York City, tickets to Jets and Mets games, American Girl dolls and an iPod Touch.
The parish's faith formation director, Suzanne Schultz, spotted an ad for the non-profit in a catechists' magazine last summer and immediately knew the parish should help. Emmy's family had joined the parish when she was five, a year after she was diagnosed with Rett Syndrome, which rendered her unable to walk, speak or use her hands.
The family made an impact on the community, starting with Emmy's inclusion in weekly catechism classes. The other children took turns helping her navigate in her wheelchair and participate in snack time.
"It was a great way for the children to break through the barrier" of knowing a peer who uses a wheelchair, Mrs. Dorn said. "They're just an amazing family. They're so active here [and] just so genuinely loving, kind and compassionate."
Emmy's family are "an inspiration to all of us," she said.
The family feels the same way about the parishioners: "They have just gone out of their way to incorporate Emmy into the [faith formation] program," said Eileen Shaughnessy, Emmy's mother.
Emmy made her First Reconciliation and First Communion and receives the Eucharist every week. The parish found materials that make the Mass easier for her to follow and plan on bringing her into the mid-level faith formation program. She was recently commissioned to be an altar server.
"I think she has a wonderful sense of faith," Ms. Shaughnessy said. "She just lights up [at communion time]. She's changed our faith, also, and the way we look at the world. We're all better people because of Emily."
Rett Syndrome is caused by a single gene mutation that leads to underproduction of an important brain protein. Although the disease is considered rare, another girl with the syndrome is born every 90 minutes.
When Ms. Shaughnessy and her husband, Ed Draves, adopted Emmy at five months old, they noticed her feet never pointed down. "It was almost like the floor was on fire," Ms. Shaughnessy said. The baby later developed "horrific" scoliosis, which necessitated rods in her spine, along with ever-increasing seizures.
Despite their physical disabilities, research has proved that girls with Rett Syndrome have high cognitive abilities. Emmy began attending an early intervention preschool and a variety of therapeutic programs at 18 months old. She's always been in mainstream school settings and is currently enrolled in a program at Draper Middle School in Rotterdam. She uses an eye-tracking computer to communicate.
"She's the happiest and most charming child on the face of the earth," Ms. Shaughnessy said. "She misses nothing in life."
Still, Ms. Shaughnessy feels hopeful about the drug trials and scientific research in the Rett Syndrome community. Girl Power 2 Cure calls the condition "the first reversible neurological disorder" and says that its successful treatment will pave the way to treatments of other neurological disorders.
"We believe," the non-profit's website says, "[that] amidst the mass confusion going on within their central nervous systems, 'Rett Girls' are smart, strong and waiting bravely for us to unlock the door to their recovery."