Fragile lives: Living with Fragile X Syndrome

Fragile X Syndrome (FXS) is a genetic condition that causes intellectual disability, behavioral and learning challenges, and various physical characteristics.


ATLANTA, Feb. 10, 2016 – When you first meet Derek and Parker DeLine, it’s more than likely they won’t look at you straight in the eye.  They’re not being rude, though, and it’s more than just because they’re young boys.  The brothers, ages 6 and 4, respectively, suffer from Fragile X Syndrome (FXS), a genetic condition that causes intellectual disability, behavioral and learning challenges, and various physical characteristics. In fact, it’s the leading genetic cause of autism, where behavioral characteristics can include attention deficit disorder, social anxiety, hand-biting and/or flapping, sensory disorders, increased risk for aggression and poor eye contact,

Rachel DeLine, the boys’ mom, has become an active proponent in educating the masses about FXS. There is never a completely quiet day in the DeLine household, but her eagerness to spread the word far surpasses the need for more hours.  While working as a synagogue administrator, tending to the kids with her husband Chris, and preparing for an annual upcoming fundraiser, Rachel took a few moments to share some insights into the lives of her boys.

Sheryl Kay: At what point did you first see something different in Derek and Parker?

Rachel DeLine: We first noticed that something was off when our oldest son, Derek, was about 7 months old.  He wasn’t hitting many of the developmental milestones that you’re told as a parent to look for.  As first-time parents, we expected everything to match up with the milestones that they give you for each month, so when it wasn’t matching, we were concerned. We spoke with his pediatrician about it first and they blew us off saying that every child develops differently and oftentimes boys develop later than girls. Having FXS run in my husband’s family, we knew a few signs to look for and at 12 months, we reached out to Emory University to get him tested. With Parker, we saw only a few signs and by 12 months  we had him tested, thinking that it would come back negative. His results came back full mutation Fragile X Syndrome.

SK:  How has FXS manifested itself in the boys over the years?

RD: FXS impacts almost every aspect of their lives. Neither one was babbling or talking until they were around 3 and even then they couldn’t express their needs, which made parenting rather difficult. They both have sensory processing disorder and everyday life is hard for them to handle. They don’t like large crowds, loud noises, too much attention on them and they refuse to make eye contact. Things that other people get very excited about like getting the whole family together for Christmas are their worst nightmare. They have a very hard time with new situations or change in their routine.

SK:  So how do you and Chris handle these differences?

RD:  We learned early on that they thrive on routine and we do everything we can to keep a consistent daily routine that they can predict. It’s hard for people to understand, but when meeting new people we tell them that the boys don’t like eye contact. I’ve learned that I don’t necessarily have to get them to change for everyone else, that I must get everyone else to understand them.

SK:  What would you say are the greatest challenges you are all facing today due to FXS, and how are you coping?

RD:  Many of our struggles are the things that most people take for granted. They have difficulty going to restaurants to eat because of the noise and amount of people. They can’t go to a regular movie theater because it’s far too loud. But you know it’s been amazing to see companies begin to understand these struggles and introduce solutions. Many theaters now offer a sensory-friendly showing of kids’ movies. They also can be very picky eaters, and while most assume that we starve Derek because he’s a string bean, luckily chicken is one of his favorite foods and he eats it all time. Another big struggle is working with the public school system to get them in inclusive classrooms. Children with FXS thrive when they’re around typical children because they’re imitators, so putting them in a classroom with typical students is best for them.

SK:  What are other people’s reactions to your sons’ condition?  Do you find most people are aware of FXS?

RD:  For the most part, people always assume that it’s identical to autism. While FXS is the leading genetic cause of autism, they’re not exactly the same. Many people are not aware of FXS and I love to educate them. We tell people that our children have FXS and give a short explanation of it and then tell them that while they have a disability, their disability does not define them. More than anything, I want people to know that my sons are amazing little people.

SK:  Tell us about the successes and high points since your sons were diagnosed.

RD:  As a special needs parent, you learn early on to home in on the successes. You also learn to celebrate the little milestones as if they were the really big ones. We celebrated that our boys even came within six feet of Santa this year for the first time ever without kicking and screaming. Derek didn’t say “I love you” until he was 4 1/2 years old. I’ll never forget that moment. Ironically, tonight we had a high point.  We went out to spirit night for his school tonight  and a cute little girl came running up to Derek and wanted a hug. This is a new friend he’s made and she clearly cares about him. While he was shy tonight with us there, she got frustrated when he wouldn’t play and said, “He’s not like this in school, he’s my friend” and while I laughed at her frustration, my heart just melted. That moment right there is why I will never stop fighting.

SK:  What advice can you give to parents who are first learning their children have FXS?

RD:  One of my favorite things about being a co-leader for our FXS Community Support Network here in Atlanta is that it allows me to reach out to new families and offer them hope. I’ll never forget when we first got our diagnosis and I felt so alone because none of our friends knew what it was. Then I was put in touch with a wonderful group of women that assured me that we would never walk this journey alone. It’s the best group you never wanted to be a part of. I tell every family that while their child may have a disability, they will do great things. The journey may be hard, but at the end of the day everything is worth it when we see our children succeed. Take it one step at a time and it will all work out.

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