By Gretchen R. Crowe
Herald Staff Writer
(From the issue of 5/5/05)

When Tom and Ann Marie Fennelly closed on their new house in Sterling, all they could remember about it was the living room. This living space, accessible to bathroom piping and large enough to fit a tall, enclosed hospital bed, provided all the makings for what Ann Marie called "the handicapped suite." The resident? Four-year-old Sean Thomas Fennelly, born June 26, 2000, and diagnosed seven months later with Angelman Syndrome, a non-progressive neuro-genetic disorder with no cure that results in delayed development, balance and walking difficulty and seizures. "Angels," as children with the disorder are often called, are also unable to speak.

Like most parents, Tom and Ann Marie never expected to raise a disabled child. After meeting and marrying at St. Mark Church in Vienna, the couple looked forward to having a large family.

"We definitely questioned ‘why us?’ at the beginning," Tom said. "But then we realized (Sean is) such a gift that we feel humbled and honored that God would choose us as his parents."

Neither Tom nor Ann Marie had heard of Angelman Syndrome before the day Sean was diagnosed, but from the beginning they knew something was very wrong.

"He would scream all the time," Ann Marie said. "He was clearly developmentally delayed. Obviously we were looking for some answers. I can’t tell you how many times I was told (it was because) I was a first-time mother."

Still, Tom said that when the doctors told them the news, their instant reaction was shock. "It was like it wasn’t registering," Ann Marie added.

For the first month of Sean’s life, an extended family member stayed at the house with Tom and Ann Marie to watch Sean while they caught up on their much-needed rest. "When he was 2 months old was the first time he could eat without pain," Ann Marie said.

When Sean was 6 months old he began physical and occupational therapy. At 10 months old, Sean began speech therapy. "We’re not trying to teach him words," Ann Marie said. "We’re learning other ways to communicate."

"That’s how Sean shows love," Tom added, as Sean grinned intently into his father’s face as they began the involved process of putting on Sean’s socks and special orthotic-lined shoes.

Sean has two siblings: 2-year-old Erin and 6-month-old Ryan. Ann Marie, who is one of five children, credited her and her husband’s faith for giving them the courage to have more children.

"We always knew we wanted more, but we were so scared," Ann Marie said. "But we figured — we’d been through this before. Because our child has disabilities wasn’t going to stop us from having the big family that we wanted to have. Life is all about family."

Ann Marie and Tom said that having a younger sister and brother around helps Sean grow and develop.

"It motivates him," Ann Marie said, recalling how one day Erin was playing at the sink and having so much fun that Sean "scooted" himself over toward her — moving on his own for the first time.

Erin "loves him to pieces," Ann Marie said. "She’s like his biggest cheerleader. She’s so proud of him. She can’t wait for him to come home from school every day."

Ann Marie recalled how Erin’s first word reflected this love for her brother.

"Here we have this non-verbal child," she said. "We waited for a year to hear the word mommy and daddy (from Erin), and her first word was ‘Sean.’"

"We say that (Sean is) special, and he is, but all our kids are different," Ann Marie said. "I’m blessed that I have three special kids. They’re all special in their own way."

Ann Marie said her goal, hopes and wishes for Sean are the same as for her other children.

"We just want to create a life for him where he’s happy and out in public," she said. "We want him to be happy, safe and as independent as possible. We want him to have friends and to be an accepted member of the community."

Ann Marie said that the Church is one place where this acceptance can be found. When Sean turned 1 year old, the Fennelly’s had a fund-raiser for a special needs trust fund at St. Mark Parish. The silent auction and raffle also helped defer the cost of mounting medical bills, Ann Marie said.

"We have been very, very fortunate," Ann Marie said. "Since the day we got the diagnosis we have been surrounded by love and support."

In April, the Make-A-Wish Foundation delivered a playground to the Fennelly’s backyard. Sean has since learned how to pull himself up and sit on the tire swing by himself.

When Sean was diagnosed with Angelman Syndrome, Tom and Anne Marie were given the names of families who could help answer questions. Now the Fennelly’s serve as contacts for other families.

"We’ve come full circle," Ann Marie said. "I feel like Sean’s given me such a purpose now. I feel like I have to do something with the syndrome."

On May 21, Ann Marie and her family are serving as first-time coordinators of the Washington-area leg of the 2005 Angelman Syndrome National Walk-a-thon in Chantilly. This year’s walk is the fourth in the Washington metro area.

Ann Marie said the walk serves two purposes: to raise money for the Angelman Syndrome Foundation and to raise awareness.

"I feel like there are benefits and services out there for people with disabilities that people aren’t aware of," Ann Marie said. "The goal is to better inform the public, families who may have a misdiagnosis, the medical community."

The walk will be held at the Sully District Police Station, 4900 Stonecroft Blvd., Chantilly, with registration at 9 a.m. and the walk at 10:15. For more information call the Fennelly’s at 703/421-5247 or go to www.angelman.org. To make a donation online go to www.justgiving.com/pfp/walk4sean.