A former small-town mayor takes time out for folks with special needs.

    William Parker is as good at getting money out of some people as he is at protecting the financial resources of others. An independent financial planner, Parker is the president of a successful fee-based money management firm in Harrisburg, Pa., but he also is an advocate for the mentally disabled and has succeeded in getting millions of dollars in state and federal funds to help the disabled and their families.
    The 42-year-old financial advisor and his wife, Deborah, developed their expertise in protecting the interests of the mentally disabled because three of their five children have Fragile X Syndrome, an inherited condition that causes varying degrees of mental and physical disabilities. But his empathy for the disabled started years before he and his wife had children. Shortly after he moved out on is own at the age of 18, Parker saw two young men with Down's Syndrome walking behind his house every Saturday. He struck up a conversation with them and went to local baseball games with them.
    "One day they showed me birdhouses they made out of popsicle sticks. I became friends with them and I realized then how fortunate I am. It also opened my eyes to how beautiful and innocent they were. I now think it was God's way of getting me ready for the future," says Parker. A few years later, in 1985, Parker became involved with Special Olympics and other families with disabled members.
    When Parker and his wife married, they hoped for a large family. They are each one of 12 siblings-in Parker's case, the family included six step siblings and five natural siblings, none of whom are Fragile X carriers. Deborah Parker has five sisters, and all six are Fragile X carriers.
Their first two children, Jacob, who is now 9, and Sophia, now 8, each were diagnosed with Fragile X, the most common inherited cause of mental impairment, occurring in approximately 1 in 3,600 males and 1 in 4,000 to 6,000 females.
    "The day Jacob was diagnosed, we were on our way home from the doctor's office in a rainstorm when we saw a 10-year-old nonverbal boy sitting in a puddle. We called police and when they came they said they did not know what to do. We sat there for two-and-a-half hours finding someone to help the boy and the whole time my wife is sitting in the car crying about Jacob. I realized then I had to become an advocate," Parker remembers. It turned out the boy had wandered away from a group home. Parker is now involved with groups that help educate police about mental disabilities and the resources that are available.
    "We were taken aback by what our children would never be able to do, but my wife and I were also brokenhearted because we wanted a large family," he says. The couple decided to fulfill their wish.
    "I did not want to play God, and when I see Jacob and Sophia in heaven, I want to be able to tell them I was never disappointed in them. The only way to do that is to have more children and not to have the (prenatal) test. They laugh and dance and sing and run to me when I come in the room. If God had sent me ten disabled kids, one day I would be able to look each of them in the eye and say I was never disappointed," says Parker.
    The couple had a third child, now 6, and named him Thomas, for those who doubted their decision. Mary, 5, followed, and neither child is affected by Fragile X. Liam, 3, is the youngest and also has Fragile X.
    Fragile X is caused by an abnormality of an X chromosome. It is an inherited condition and the child of a carrier usually has a 50-50 chance of developing the syndrome. In males there is usually significant intellectual disability accompanied by a range of physical disabilities. In females, the mental and physical symptoms are often milder because the girl's other X chromosome takes over some of the work of the mutated chromosome.
    There is no cure for the disability, but advances are being made in treating the symptoms, including developing better speech and language therapy. Because the symptoms of the disability can vary so widely, it is important to develop therapy individualized to each child, according to the National Fragile X Foundation, of which Parker is a board member. Many of those who have the Fragile X gene are also autistic, as are two of the Parker's children, Liam and Jacob.
    Unlike other mental disabilities, the spectrum of autism disabilities, including Fragile X, is mushrooming in number. The Parkers work with other parents to try to help them become advocates to lobby legislators. They also work with individuals who need help coping when they learn of a child's disability.
"I tell them it will get easier," says Parker, who is quick to add, "There are a lot of people who work harder than I do."
    However, he testifies before congressional committees frequently and has been instrumental in lobbying for and obtaining more than $100 million to fund Fragile X research at the National Institutes of Health and the Centers for Disease Control and Prevention. He has helped solidify a line item in the federal budget to fund newborn screening and education for OB/GYN doctors about Fragile X.
    Those who have decided to have children, and friends and strangers who know of the Parkers, say Deborah and Bill are inspirations to them. "Many people have said that without us having more children, they would never have had the strength to have children. That does not mean anything about those who are tested and decide not to have more children. I am not judging them, but our house is always interesting," Parker says with a laugh. "We have 15 therapists a week going in and out. You have to put it in perspective, because no one is immune from tragedy. There is an old Jewish saying: The same fire that melts butter hardens steel. These were the cards that were dealt us and we are enjoying every minute we can by celebrating life."
    Parker does not confine his energies to his family. He is involved with family groups and various advocacy and research organizations, including the M.I.N.D. Institute (Medical Investigation of Neurodevelopmental Disorders) at the University of California, Davis, where he serves on the board. He co-founded the Center for Autism and Developmental Disabilities in Lancaster, Pa. He also has helped create a Web site, specialplanning.com, to assist families with special needs children or adult members.
    An independent financial advisor, Parker is a Certified Senior Advisor and a Certified Estate Planner and is President and CEO of GrandView Asset Management, previously called Senior Financial. Parker believes in niche marketing and has embraced this philosophy through creating divisions under GrandView Asset Management, which offers fee-based money management. GrandView 401k Advisors develops and manages retirement plans. Senior Financial is now a division that markets to retirees or those about to retire. Special Planning LLC is a division that provides estate planning and financial guidance to families with individuals with special needs. Parker's firm has $500 million in assets under management. He is a representative for National Planning Corp., a subsidiary of National Planning Holding Inc.
    Part of his work as a planner involves advising families with disabled members and helping them plan for the future. "Of all the families with disabled members, 86% do not have an estate plan, and many of the plans that I have seen are not funded properly. We want to be a resource to families, as well as other planners, because getting people the right advice is important," he says.
Parker also makes time to work in politics. He was mayor of Paxtang Borough, Pa., and he works for other fiscally conservative candidates. Shawn Dreffein, president of National Planning Corp., says, "It's an honor to have someone with such an altruistic nature be a part of NPC. Bill's commitment to charitable causes is exemplary, and I am proud to be able to call him a colleague and a friend."  
    From Parker's perspective, he feels that he is just doing his part. "It is part of my personal responsibility. Someone who is disabled or economically challenged or born in the wrong part of town deserves just as much of a chance as anyone else. If you have been successful, you have a responsibility to help people."