Living a Fragile Life
Rare Syndrome Changes Outlook for Bevins Family
Grace Phillip
Ashland Beacon
World Fragile X Day is Saturday, July 22nd. It is day that celebrates the families impacted by Fragile X. Exactly what is Fragile X? Fragile X syndrome is also known as Martin-Bell syndrome and is the most common form of inherited learning disabilities. It is a rare genetic condition that causes a range of developmental problems including learning disabilities, physical abnormalities, anxiety, ADHD and autism.
The syndrome is caused by an abnormal protein in the X chromosome and gets the name because it looks broken, or fragile when looking at the X chromosome through a microscope. About 1 in 7,000 males have inherited the gene and typically have the most severe symptoms while Fragile X appears in females in about 1 in 11,000.
Caden Bevins is a young man in our community with the FXS syndrome. Mandy Bevins, Caden’s mom, sat down with me to discuss the struggles their family has faced through the years and what it was like dealing with a rare syndrome.
According to Mrs. Bevins, a female who is a carrier has a 50% chance of passing the gene to her sons. She was surprised to learn she was a carrier, especially after having two older sons with no problems. “We noticed that Caden was missing developmental milestones. He was slow rolling over, pushing himself up, but the doctors said everyone develops differently and wasn’t too concerned. When Caden was 12 months old, he still couldn’t stand or pull up. He wasn’t trying to talk or babble, and that is when the doctors started searching for answers.”
Mandy and her husband Mike were referred to Cincinnati Children’s in hopes of finding those answers. At first, the doctors suspected autism. Caden was too young for an autism diagnosis. “They tested him for everything under the sun” she continued. “I never really understood that part of it because Fragile X is diagnosed with a blood test.”
After the testing was completed, they received a call. Mandy said, “I will never forget that day. I got a call that we needed to come and talk to a genetic counselor. My mom and I went; they took us in this little room. This lady comes in with a little jam box and turns on this soft music…it was very odd. She sits down and starts telling me all this stuff. Of course, they are doctors, so she is telling me the very worst cases. I was told that he may never walk or talk, go to school or get married. She mentioned the word Fragile X. I had no idea what she was talking about… I just went into a deep dark hole trying to process what she was saying… To be honest, I didn’t really hear much from then on.”
Back in Ashland, they went to their pediatrician, who admitted she knew nothing about the syndrome. “She pulled out a book right there and started to read about it.” That’s when the Bevin’s family learned how rare FXS is and began to understand the challenges that Caden would face in the future. They were just as determined that he would have every chance to reach his full capacity.
Mrs. Bevins continued, “It was so overwhelming in the beginning. I finally had to say, ‘OK, what does he need right now? What is Caden’s immediate needs?’ That was physical and occupational therapy and then speech therapy. That is where First Steps came in.”
First Steps is an early intervention program for children under three. Caden began receiving the needed therapies through their program. They were also told that Caden needed to be a part of a Fragile X Clinic. In the beginning, he went twice a year and still goes once a year for assessment. At the clinic, they learned there are three levels of FXS: mild, moderate, and severe. Caden falls in the middle.
Mrs. Bevins shared, “I was told when Caden went to first grade that he had to be in special ed. It broke my heart. I knew it could happen, but I was hoping it wouldn’t. I didn’t want to hold him back but was afraid if I let him go in special ed., they would relax, and I couldn’t get the most out of him that he was capable of.” Eventually, they realized this was the best for Caden. It was difficult at times for him. He received the individualized attention he needed but sometimes he felt isolated from the other kids. Mrs. Bevins remarked, “He didn’t understand why he couldn’t be in the class with his friends.”
The years passed, and Caden started Boyd County High School. He was never able to read or write, but the high school experience taught him life skills. That is where he thrives now. Mandy added, “There isn’t much he can’t do around the house.”
Caden is now 18 and graduated from BCHS in May 2023. As special needs, he can go back to school this fall and continue until he is 21. That is the plan for now.
What is the future like for this family? “That’s a hard question.” sighed Mrs. Bevins. “His dad and I have had to really have some hard conversations. Caden has said he wants to go to college. It has been really hard on us…we want him to be the best he can be. How far do we push and how far can he go?” At the beginning of the year, they were told about a college for special needs that allowed them to attend classes and live in a dorm with the help of an assistant. Mrs. Bevins laughed and said, “They asked me if we would be interested in that for Caden. I said….no…no way. My head knows it would be good for him, but my heart isn’t ready right now…who knows though in another year or so.”
The Bevins are hoping that one day Caden will be able to get a job and be self-sufficient. He still struggles with anxiety and change, but Caden is a loving, happy young adult now. Whatever the future holds for him, he is certain to have the love and support of his family to make him the best he can be.
If you would like more information on Fragile X Syndrome check out fragilex.org.