BELLINGHAM - John and Marilyn Moullen are light sleepers, their ears alert to any out-of-place sound from their 5-year-old daughter, Kylie, who has severe developmental disabilities.
They are practically on a first-name basis with 911 dispatchers because of her frequent seizures.
"There's never a moment without concern. We're constantly on call, even when we're away," John Moullen said.
The Bellingham couple's round-the-clock vigilance has prompted them to start a nonprofit project they hope will help other families in similar straits.
Creation of Kylie's Project, which seeks to raise millions of dollars and provide a statewide support service for families with special-needs children, was announced Wednesday by Moullen and partner Merle Adrian.
Special-needs children include those with learning disabilities, mental-health problems, Down syndrome and cerebral palsy.
About six in every 100 children in Washington have a special need, according to the National Center for Youth With Disabilities, a nonprofit group at the University of Minnesota.
The first goal of Kylie's Project is to ease some of the burden for parents, Moullen said.
In the short run, the project will offer respite in-home care and develop an electronic database to provide information and referrals for special-needs children.
The fledgling program has 10 consultants in such fields as accounting, business, law and health care. A committee of parent
volunteers also is involved.
The database will allow a child's entire medical history to be available in one place, making it easier to tell doctors or other caregivers about the child's needs.
"Right now, parents must be 24-hour-a-day caregivers and advocates," Moullen said.
When their long-term baby-sitter left, Moullen and his wife called 50 agencies from Bellingham to Blaine to try to find a replacement. They were unsuccessful.
An agency that could help find them a caregiver would be a lifesaver, he said: "Relegating care to someone else allows you to relax a slight bit of the pressure you experience every day."
One of the agencies where the Moullens sought respite care was Bellingham's Visiting Nurse Personal Services, but the home-health-care company didn't have the money or staff.
Thus began a series of meetings that led to creation of Kylie's Project. Moullen sold his photography company and Adrian, the Visiting Nurse chief executive officer for 13 years, resigned to work full time on the project.
The program will be a separate agency but under the umbrella of Visiting Nurse.
Visiting Nurse has provided $249,000 in seed money so project participants can develop a plan for respite care.
Visiting Nurse serves Whatcom, Skagit, Island and San Juan counties. Within that area, the study estimates that as many as 24,000 children under age 22 have a special need. Kylie's Project will serve that area first but expand later.
In the long run, the project hopes to create a "center of excellence" to meet children's special needs throughout the region.
The long-range plan would cost millions, which the group already has started to raise by approaching national and international businesses with an interest in Northwest Washington, Adrian said.