“He has Fragile what???” was my response 9 years ago when the doctor told me the results of Matthew’s tests. “Fragile X Syndrome” the doctor repeated again.
I had never heard of it. And, more than likely, you’ve never heard of it either. And yet, Fragile X Syndrome is the most common inherited cause of intellectual disabilities.1 It is estimated that 1 in 4000 males and 1 in 6-8000 females worldwide have Fragile X.2 Fragile X syndrome (FXS) is a genetic condition that causes intellectual disability, behavioral and learning challenges and various physical characteristics. Though FXS occurs in both genders, males are more frequently affected than females, and generally with greater severity.3 And that is why July 22 has been declared as Fragile X Awareness Day. It is crucial to raise awareness for this often unheard of and misdiagnosed disorder.
My son, Matthew, is 13. He is a happy, loving young man. Yet he is burdened by a large amount of anxiety. He has trouble with overstimulation of all of his senses – sight, sound, touch, taste, smell. This makes it very difficult to function in our highly overstimulating society. Think about it the next time you walk into a restaurant, a store, a mall, a school, a church, or any public place. Notice your surroundings. Take note of all of the things that are specifically targeted to overload your senses. Think about how it makes you feel. Sometimes it’s more than we, the “normal” people, can handle. Now imagine being in Matthew’s shoes. His brain does not produce enough of the protein that is necessary to keep him calm and regulated. It really is more than he can handle. His body will turn to defense mode and sometimes totally shut down. His response is typically to run away from whatever he perceives to be bothering him, or he will strike out and try to hit whatever he perceives it to be. When he was much younger, he would become physically sick. I remember the first time we tried to take him to the world’s most overstimulating place, Walt Disney World. He was about 3 and we didn’t know about Fragile X Syndrome yet. By the time we had walked down Main Street USA, Matthew was warm with a fever, and had vomited. We left the park immediately and returned to our hotel. Within an hour, after being able to calm down at the hotel, the “sickness” was gone. Amazing…..our brains are an amazing thing!
Why am I writing this? Because I want you to know what an amazing young man my son is. Most people only see the results – the running, the hitting, the headphones he wears to help him cope, the way he looks a little bit “odd.” But I want you to know that he is the most loving, compassionate person I know. He is real, he is pure, he is genuine. He says what he feels – whatever he is thinking. No beating around the bush there. He believes and trusts what you say. He loves unconditionally. He loves to hug, and I am so blessed have a teenage son that still loves to hug and kiss his momma. He is loyal to you – once he has accepted you into his “inner circle” you are in there forever. Like no friend you have ever had. He reminds me of what Jesus must have been meaning when He said, “Truly I tell you, unless you change and become like little children, you will never enter the kingdom of heaven. Therefore, whoever takes the lowly position of this child is the greatest in the kingdom of heaven. And whoever welcomes one such child in my name welcomes me.” Matthew 18:2-5, NIV. What does it mean to “become like children?” -- I think it means to become all of the things that I’ve described my son as. This also makes me think that maybe I am the one who is “disabled,” not my son Matthew.
July 22 is this Sunday. I hope you will join me in wearing green, and telling people about Fragile X Syndrome. And next time you see me and my son, or anyone else struggling in public, you will have a better understanding, and a true appreciation.
For more information on Fragile X Syndrome, visit the following resources:
www.fragilex.org - National Fragile X Foundation
www.fraxa.org - FRAXA research organization
3 www.fragilex.org - the National Fragile X Foundation