While sibling relationships aren’t always easy, Alexandra ‘Lexi’ Lakhman and her brother Joe have always been close. Despite Lexi being six years older than Joe, she grew up viewing Joe as a role model, particularly for his positive outlook on life.
Joe was diagnosed with spinal muscular atrophy (SMA) Type 2 in 2002 when there wasn’t nearly as much information or as many options for treatment as there are today. Because of this, Joe battled illnesses throughout his childhood, and as a result, chose to be homeschooled starting in sixth grade. “Being home and growing up just being around your parents and your sister who is out in the world going to school and playing sports can be hard. I never wanted that to take a toll on his mental health,” shared Lexi.
As Joe got older and started receiving more treatments, Lexi and her family investigated options to connect with their local SMA community. That’s when they learned about Cure SMA. “I saw all these amazing individuals who have accomplished so much despite physical disability. I wanted Joe to see that and to know that he doesn’t have to live at home and be indoors. Joe can have a dream and accomplish it and be successful.”
From that moment, Lexi began volunteering as Communications Chair of the New Jersey Chapter of Cure SMA. As Communications Chair, one of the initiatives she created was a community member spotlight, highlighting individuals affected by SMA in the New Jersey area. Through this, she was able to help Joe connect with peers and learn more about strategies and options to gain independence, pursue schooling, and consider career options outside the home.
Joe is now 20 years old and entering his junior year of college at Seton Hall, studying computer science and data analytics. Ideally, he would like to become a video game designer. Last year was Joe’s first time living on-campus and he says that the experience of living more independently is one of the best things to happen to him.
However, that doesn’t mean that college and transitioning to a life of more independence has been easy for Joe. He faced battles receiving the accommodations he needed in a class, as well as difficulties being able to participate in social activities, like fraternity mixers, which are held in non-accessible buildings.
Initially, he thought it would be difficult to make friends but had a personal goal of becoming as involved as possible at Seton Hall. Joe quickly learned making friends was quite easy, joining clubs and on-campus podcasts, as well as becoming a peer advisor to incoming freshmen. “You make friends without even trying … whether it’s from classes or different study groups, you really just have to be yourself. The people that want to be your friend will find you,” he said.
In talking to Joe, it is clear he’s found a strong and supportive community for himself, something he partially credits to his fellow peer advisors, a group of 48 who are “like family”.
Having a support system on-campus has also proven to be imperative for caregiving purposes. During the school year, Lexi normally comes to help out once a week, but the other days he relies on either nurses or a group-chat of friends.
“When a nurse backs out, there is no guarantee that the agency will have someone ready to step in. But from one simple text message to a group of 15 friends, someone will respond and come to help,” shared Joe.
In addition to on-campus accessibility, travel is another issue important to the Lakhman family. Joe’s wheelchair is custom, and he is unable to transfer to another chair, meaning air travel isn’t currently an option. This is particularly important now, as Lexi is the current title holder of Miss New Jersey USA and is gearing up for the Miss USA pageant on October 3rd.
Since Miss USA is being held in Reno, Nevada, unfortunately Joe will be unable to attend. Lexi said, “It’s sad for me because he has been there supporting me at every single pageant that I’ve done. For him to not to be there at my final goal is really tough.”
Cure SMA will be following along and sharing Lexi’s journey as she competes for Miss USA and spreads awareness about spinal muscular atrophy. We know Joe will be joining us in cheering her on. You can help by supporting Cure SMA’s Greater Independence agenda and air travel accessibility initiatives. Learn more here.