Tag Archives: Fragile X Syndrome

Letting God be God

When Bill and Deborah Parker got married, their dream was to have five children. That dream was shaken when they discovered that their first child, Jacob, had Fragile X Syndrome, an inherited disease that causes intellectual and physical disabilities. Fragile X also has features of autism.


cover-june16The couple, members of Legatus’ Harrisburg Chapter in Pennsylvania, was faced with the dilemma of what to do with their dream.

“When we found out on Mother’s Day that Jacob had Fragile X, Deborah was already pregnant with our second child,” said Bill Parker.

They went to see a genetic counsellor and found out that Deborah’s chromosomes were affected. Every child they conceived would have a 50-50 chance of being born with Fragile X.

“When we got the diagnosis, we went through grief,” said Deborah. “Then one day we decided this was meant to be. We must move mountains for them, but every year we have a good cry.”

The spiritual impact of having a special needs child can only be described as a journey with an initial period of grief and oftentimes anger, the Parkers said. For those with a strong Catholic faith, the journey is still extremely difficult.

After the diagnosis, the immediate dilemma for the Parkers was whether or not to continue having children. Bill discussed it with his spiritual director.

The Parker family (L-R): Deborah, Jacob, Sophia, Mary, Bill and Liam, Thomas (Christine Chardo Photography)

The Parker family (L-R): Deborah, Jacob, Sophia, Mary,
Bill and Liam, Thomas (Christine Chardo Photography)

“He said to let ‘God be God,’” Bill explained. “We decided after this to continue to have children — and if we had disabled children, then we would just have to love them.”


Learning to manage three children with Fragile X took years and is still a work in progress for the Parkers. “We had family members second guess us,” Deborah said. “When we got pregnant with our third child, we named him Thomas for all those who doubted. Three weeks after he was born we discovered he didn’t have Fragile X. Our fourth child, Mary was born on All Saints Day. Our doctor came over personally on Thanksgiving Day, crying, to give us the news that she wasn’t affected by Fragile X.” Jacob, their first child, is non-verbal. Sophia, their second, gets overwhelmed easily and is self-injurious. Liam, their last child, also has Fragile X.

“Last year, when Sophia was having problems, we saw that when God presents us with challenges, He helps us through,” Deborah explained. The Parkers are now working with doctors specializing in self-injurious patients.

When things get hard, the family turns to God for direction. Deborah describes her faith as being more “quiet,” while Bill speaks publicly about his faith. He has come to believe that God wants to use him to help other families facing similar trials.

parkers-billanddeborah“We met a family in Church who have a son just like Jacob,” Deborah said. “His two arms are in a cast because he is self-injurious. But these two boys understand each other and spend time together. It’s one of the only times that the other boy is not self-injurious.”


The Parkers founded the Center for Autism and Developmental Disabilities in Philhaven, Pa., and direct a support group for families with Fragile X. Bill advocates for special needs children at the local, state and national level. Their local hospital now refers families who get adverse diagnoses for their children to Bill and Deborah.

“A couple of years ago, we met Rich,” Bill said. “He’s a 40-year old adult who has Asperger’s. He rode 15 miles on his bicycle and knocked on our door. When we opened, he asked if we were the Parkers and then said that we were supposed to help him. His parents had abandoned him.”

The Parkers ended up “adopting” him by having him over for holidays, giving him gas money and buying him clothes.

Another time, the Parkers got a call at 2 a.m. from the local hospital. A woman had just delivered a baby who was severely ill. The hospital wanted to take the baby off life support, and the father had abandoned the mother and child. Bill drove in and met the mother.

“The first thing we are going to do is pray a rosary,” he told her.

She told him that she hadn’t prayed the rosary since the fifth grade and began to cry. They soon discovered that the baby had a rare condition, and Bill Parker happened to know a top specialist for that condition. They put the specialist in touch with the attending doctor, and the baby was saved. Today, the Parkers are the child’s Godparents.

Mac and Renata Nowakowski with their three children (L-R) Teodor (15), Mac Jr. (19), and Dominik (13) (Nowakowski family photo)


When Mac and Renata Nowakowski of Legatus’ Vancouver Chapter learned they had a child with autism, they too were devastated.

“Faith helped us through,” said Renata, now the mother of three children — two with autism.

“In the beginning, it was difficult,” she said. “You get mad at God. We felt at first that life had robbed us. But with prayer, you keep on going. Other families prayed for us. Now we are 10 years into this and we know this is what God wanted for us.”

A 2012 study in the Journal of Autism and Developmental Disorders, which used data from 77,911 kids in the 2007 National Survey of Children’s Health, found no evidence to suggest that American autistic children are at an increased risk for living in a household without both parents compared to normally developing children.

In 2010, however, University of Wisconsin at Madison researchers reported that a longitudinal study of 391 families showed that parents of autistic children were almost twice as likely to divorce as couples who had children without disabilities. The differences in divorce rates between the groups did not appear until the kids were adolescents or adults.

“With faith and prayers, we saw what we were made of and what our marriage was made of,” Renata explained. “This has strengthened our marriage. I feel I can trust my husband and vice-versa. When one is down, the other is up.”

Both couples say that finding or creating a supportive community makes a real difference for special needs families. The Nowakowskis didn’t get involved in autism networks in the beginning, but after several years they found themselves mentoring other families.

Passing on the Catholic faith to special needs children is another challenge. Going to Mass as a family can be nearly impossible.

“We went to church separately for nine years,” said Renata. “And then last year, we started to go as a family, but we go to the cry room.”

Rick Santorum reads to his daughter Bella (Santorum family photo)

Rick Santorum reads to his daughter
Bella (Santorum family photo)

Many special needs families eventually come to a place where they can find joy in the simple things about their children. Along with the difficulties, there is also beauty.

“The beautiful thing about Bella is that she is a great teacher,” Sen. Rick Santorum told Legatus magazine about his daughter who has Trisomy 18. “She loves intensely and is aware. She has low cognitive function but is incredibly loving and really responsive to acts of love. All Bella can do is love me. But that’s how the Father loves me. We are all spiritually disabled. The thing that matters most is our responsibility to love God.”

SABRINA ARENA FERRISI is Legatus magazine’s senior staff writer.

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