joubert syndrome

Today my brothers met for the first time

I, like many, am a lover of my family. More than just my Mom and Dad, my siblings mean the world to me. I’ve always been a caregiver and taken the responsibility of making sure everyone around me is happy before myself. Jokingly, I sometimes refer to myself as the “third parent” to my brothers and sisters. Specifically my two youngest three-year-old brothers Abram Aleshire and Colton Prifogle. 

My family tree can get a little confusing, I admit, so I’ll try to keep it as simple as I possibly can. When I was going into seventh grade my parents got divorced. Devastation and a few years of depression immediately set in, but thankfully both my sister and I have worked through it. Not long after the divorce did my mother remarry, and just a few months later my father did the same. And, ironically, a couple months after each of them got married they ended up pregnant. As such, my brothers are exactly eight months apart. Colton was born September 20, 2011, and Abram was born April 20, 2012. 

As these things always go, my brother Colton was born with some complications that we are working hard to help him live with. Colton, after a lot of confusion and mistreatment, has been diagnosed with a rare disorder known as Joubert Syndrome. Colton’s syndrome affects the cerebellum (the area of the brain controlling balance and coordination) and prevents him from doing day-to-day activities we all often take for granted. Colton cannot walk or crawl. He cannot easily keep his head up on his own. He cannot hold things and he cannot sit up, roll over, or gain control of his arms and sometimes legs. To make matters worse, Colton’s Joubert prevents him from being able to breathe or eat on his own. The tracheostomy tube in his neck and the G-tube in his intestine give Colton the oxygen and nutrients he needs to live. 

Colton’s life has not been easy or standard by any means. He’s a stark contrast to my brother Abram whose only health problems consist of a broken leg at the age of two and an unnatural obsession for Star Wars (courtesy of your’s truly). 

Despite this, I love both my brothers the same. Yeah, I get to take Abram around and play with him whenever I want. I can get him ice cream or go on spontaneous trips to the zoo without a lot of hassle or worry. I love, love, love my little brother Abram so much it’s crazy. But what I don’t get with Abram is that rare, heart-warming smile Colton sometimes grants me. I’m not thrilled enough to dance whenever Abram holds my hand and I don’t think anything of it when we do something really fun. Everything is special with Colton and everything is a gift I will never take advantage of. 

Both of them are ridiculously important to me and today I got to see them together. 

In all three years of my life with these two knuckleheads I’ve never seen them interact or play together. Today, at an award ceremony for my sister that both parents were attending, I got to see it. 

Needless to say the experience was one of the best of my life. 

Abram begged me to keep taking him over to play with Colton. He wanted to talk to him and watch him all night. Colton’s responses are always small and slight, but they put the biggest smile on all of our faces. Just seeing Colton allow Abram to touch his hands (something he never lets anyone else do) filled me with jealousy, happiness, and pure joy. Colton was tolerant of Abram’s insistent, curious touches and just as eager to watch the bundle of energy outside his wheelchair. 

The two loved each other right away, kind of like I loved them right away. The night was short and the playing ended far too soon, but the memories and knowledge that my brothers are equally as incredible and loving of one another as they are me will always stay in my heart.