Jul 22, 20215 min read

Fragile-X in My Life

July is Fragile-X Syndrome Awareness Month! This is super important to me, so I think it deserves a post of it's own. Let's talk about it!

What's the Big Deal?

If you follow me on Instagram or know me well, you may know why that this is incredibly important to me because both of my siblings are affected by Fragile-X Syndrome. Not only do I find it necessary to talk about Fragile-X, but about what it's like to live with someone who has special needs.

Personally, I rarely meet people who have interacted with people who have disabilities, let alone who live with them. So, I think it's important to shed light on the special needs community in order to support those who are directly effected and their friends and families.

What Is Fragile-X Syndrome?

It's a genetic condition caused by a mutation on the FMR1 gene. It presents intellectual, behavioral, and learning challenges for the affected individual. For reference, it's very similar to Autism—in fact, people with Fragile-X are often co-diagnosed with Autism.

Something else you need to know about Fragile-X is that it's a spectrum disorder, meaning that it affects different people differently. As a whole, males are more severely affected than females because of the genes in their chromosomes (I won't dive into the details, but they're really interesting). This is actually showcased within my own family, as my brother has severe special needs and my sister is only mildly affected.

This is a very basic and vague explanation, but hopefully you get the gist! :)

Growing Up

I truly had an amazing childhood, I can't think of anything I'd change. Something that has always stood out to me, though, is people's reactions when I told them that my siblings had special needs. Most of the time, people would apologize about my circumstance. I never really understood why. Of course, it hasn't always been easy, but it's always been a blessing, and I feel as though many people overlooked the good that came from Fragile-X.

At one point, I did too. It was around first or second grade when I realized that my familial situation was different from the other kids I knew. This caused me to feel resentment, not towards my siblings, but Fragile-X. I saw that my normal was not the normal, which was really hard to come to terms with. However, towards the end of elementary school, my view shifted.

There wasn't a pivotal moment that caused me to see Fragile-X as a blessing, but the switch was flipped when I realized that I had a broader perspective than most of my classmates at the time. While many of them were celebrating if their crush liked them back, my special needs community was celebrating one of my friend's recovery from a surgery that attempted to lessen the seizures caused by his special needs. Because I didn't live a "normal" life, I had a unique perspective that taught me that there are things bigger than me in this world. While I feel like I would've learned empathy and perspective eventually, Fragile-X instilled these values in me from an early age. For that, I am forever grateful.

My Brother

Patrick is the one who has severe Fragile-X Syndrome. The doctors actually told my parents he may never be able to speak because of his diagnosis—that can be the case with some people who have Fragile-X. But let me tell you, that's most definitely not the case with my chatty little brother!

It isn't always easy. We live with a 17 year old boy who is cognitively 5, it's only natural that there would be challenges. It's hard when he throws a tantrum because other people will just stand and watch. It's hard when he doesn't understand what it means when someone passes away. It's hard. I truly believe that I don't even see the brunt of it, like my parents do.

But just because it isn't easy doesn't mean it isn't worth it. In fact, I see it as beautiful. Patrick lives every day with an innocent hope and wonder towards the world; he does not care that society measures one’s value by their looks, wealth, education, test scores, number of social media followers, or fame. He simply loves everyone.

Not only does Patrick love, he defies. It's just what he does. And he doesn't even know it! He doesn't realize that he defied what the doctors said, that he defies what society believes about people. He never ceases to amaze me.

My Sister

Fragile-X looks different with my twin sister; in fact, if you met her, you would really never know that Fragile-X is a part of her life. It's this very reason that has presented a completely separate set of struggles than those of my brother, especially in education.

Since Makenzie and I are in the same grade, it's very easy to see that schools often struggle to support students who don't fit the stereotypical student mold, like those with special needs or those who are learning English as a second language. It's these students who slip under the radar of many school administrations, the gaps in education, if you will. I've seen the lack of assistance when my sister struggles because of her Fragile-X, not because the schools were bad, but because there isn't enough budget for that kind of help (which is a whole other discussion). It's caused me to be more aware of when someone is struggling academically and be willing to try to help as a peer, since sometimes there aren't professional resources available. I can attribute my passion and care for quality, individualized education to my sister, she has helped light a flame for education in my heart.

Mak has also shown me what unconditional love looks like, a lesson that very few truly experience. She has supported me in my athletic, artistic, academic, and spiritual pursuits. She loves me on my good and my bad days, and the mundane days in between. All the while, she pushes herself to achieve to the best of her own abilities. She never ceases to amaze me.

How Has Fragile-X Changed Me?

Because I grew up within the special needs community, I've interacted with all different types of people that I don't think I otherwise would've known. It’s so easy to find people that I’m comfortable with and never leave that bubble of familiarity; however, being with people that participate in different activities or hold different beliefs than me has broadened my perspectives and encouraged me to grow. I feel as though I wouldn't be as willing to branch out if I hadn't had my siblings in my life.

People ask me how I can love someone in both their best and worst moments. Makenzie and Patrick. My siblings teach me how to love others well, in spite of their abilities, looks, or rough days. They remind me that material or outer things don't really matter, it's what's on the inside of someone that counts. This is, I would say, the most important lesson I learned from them: loving people that are different from myself.

Because of them, I have learned that joy is the key to a meaningful, fulfilled life. I have the courage to value things other than what society tells me to value and love people that society deemed as outcasts. I have become a positive, empathetic, wonder-filled, and joyful woman. Some people apologize that my siblings have a disability, but the reality is that, without Fragile-X Syndrome, I would be sorry about the person I would have become.

This has been a pretty long and personal post, but I hope you guys understand why Fragile-X Syndrome Awareness Month means so much to me. Don't forget to love those who are different from you, because they deserve love just as much as you do!