(Xan and her brother Addison)
(Xan and her brother Brighton)
After finally beating the odds of a nearly fatal infection that spread throughout her body, starting on her birthday December 24th, 2016, Xan (short for Alexandra) spent a few months in Hannheman Hospital in Philadelphia and made a surprising recovery, albeit still with life-long consequences, and then transferred immediately from Temple University to finish school in Los Angeles.
In good ol' Xan fashion, she survived a life-threatening experience and moved on without looking back or second guessing herself. And as she, myself (Brighton, her brother) and the rest of our family (two wonderful parents and an equally resilient older brother Addison) finally felt like the worst of it was behind us, Xan succumbed the very next year, again on her birthday, to the symptoms of her initial illnesses and went nearly an estimated twenty minutes without oxygen to her brain, ultimately leading to significant brain damage.
(Xan fighting for control of her legs, with the help of skilled therapists at her side every step of the way)
Fast forward several months and here she is today. After spending most of the time in multiple hospitals, struggling to diagnose her and juggling between the importance of healing vs. maintainence, we have finally found a place willing to see the potential my sister has for recovery, or at least enough to take care of herself and live the rest of the long life she has going forward.
From the slow process of diagnosing and treating my sister's many ailments, to managing these concerns with what insurance is willing to pay for, we have done everything in our power to commit Xan to recovery, rather than simply maintaining her health. And it is taking a physical, mental, and financial toll on everybody involved. Most importantly, it reminds us how dangerous it can be for Xan to be stagnant and not use the very muscles she is fighting to regain control of.
My father, brother and I, unfortunately, have not been able to be around for all of it, since we live in Pennsylvania. A major part of each and every day is also anticipating our phone call with Xan, where she gets to practice breathing and speaking after already finishing her seemingly endless hours of intense therapy. She is exhausted, but hardly ever feels close to being finished. My mother, who does live in Los Angeles, has spent every waking moment at her side, giving up countless opportunities and careers to be there, and like all of us, putting life on hold until Xan can live hers without pause.
When I made my first trip out to see Xan, I prepared to spend time helping her adjust to the neuro rehab facility she was arriving at, but it was a challenge at first to fully register the situation she was thrust into. To see your sibling, or any loved one for that matter, change and struggle in such dramatically difficult circumstances, or even just suffer so emotionally due to what at first glance may seem like a simple injury, there are simply no words for it. But after beating the odds the first time in Philly, neither Xan nor those fighting with her were in anyway susceptible to defeat, no matter how tired we all were from the first round. And when I first got to hear her voice since the injury, I knew that the only option she saw for herself was to get stronger.
Since entering the residential rehab she is in now, Xan has made considerable strides in her recovery. Everything from working up the courage (she doesnt like to admit it, but she can be shy) and strength to use her vocal cords and be heard, to being able to straighten her arms and neck, which typically bunch up from the painful bouts of muscle dystrophy, so that she can pick food off her own plate and lead it to her mouth. All things that we undeniably take for granted.
Xan is there, she has never left, and still daily she reminds us, but she has her own body fighting against her and the best we can do is give her the services that allow her to slowly regain control. All of which is an overwhelmingly expensive and frustrating process. She needs and deserves a custom made wheelchair tailored to her needs, the medicines that are used to tap into the muscles that she has the least control over, and caregivers that we will eventually have to hire to be there for Xan and our family.
Obviously, we are not shy to making sacrifices, as we are hoping to move her out to Pittsburgh, where all of the family can then be there for her and give Xan a chance to be surrounded by even more people that love her, for there are plenty.
(Xan and one of her many Furry Friends in physical rehab together, taking a break before she goes back to the one of many hour long sessions. Here she is about to practice standing up for at least a few minutes, with help from a few devoted therapists of course, so that one day she won't even need someone in the room to watch. Except for maybe a dog, because why not.)
Though Xan may like to act like the toughest, most brutally honest person you'll ever get to meet, listening to her favorite music and sharing the most ridiculous and innappropriate stories in an attempt to outshine anyone unwitting enough to even consider challenging her, she is in all aspects one of the most experienced, emotionally aware and courageous young adults whose life I am proud to be a part of as a brother and a friend. Much of who I am is unequivocally owed to Xan and I can confidentally speak for many others who would without hesitation be proud to say the same, no matter their age or background.
When I sat in the hospital years ago listening to heart wrenching diagnoses by one of the many doctors seeing her at any given time, dropping Xan's name as if they had any idea who they were talking about, I learned then that it was her ability to see past the brutalities and make the best of the hand shes been dealt. And she was right. So this time, we're going to challenge her to make this the last major hospital visit for as long as humanly possible, as we ask of you, those who would like to take part in one of Xan's many life changing experiences, to help ease the physical and mental stress we will all surely continue to endure.
Xan may be young, but she has learned in a matter of months what many fail to comprehend until late in their adult lives. This being the ability to appreciate everything that life can offer, from good to bad, and how your actions directly impact them. At first this realization was the horror of being barred from having not just solid foods, but Xan's gold standard of all solid foods: Taco Bell. But shortly after having the first bite of a taco supreme in months, Xan started to appreciate how much she hated being fed by someone else and began working harder to use her hands and arms to finally feed herself. With this kind of determination, every little bit of effort put into her recovery is worth it, no matter how miniscule it may appear at first glance. Once Taco Bell was just another fast food chain Xan had an obsession with, and now it is one of Xan's many goals that she has defiantly and successfully conquered.
Throughout all of this though, I am constantly reminded of last year. How it felt like it was the end of the world for our family, like all hope was lost, but then Xan bounced out of a drug-induced coma like it was a vacation to tell us we were all wrong (about everything) and continued to defy every expectation the doctors had of her up until the day I rolled her out in the hospital's wheelchair, her more frightened of me directing the chair than what she had just barely survived. And just like last year, we will all have to suffer just one more proud rant the day that she decides to stand up out of her wheelchair, sassy as ever, and into the next chapter of her life. All of this thanks to the people who can see her potential to make a difference in all our lives and from there immediately do something about it.
Addison and I want to help Xan and our family and need your help too in order to give her the best chance at recovery. Any donation or even words or acts of kindness are appreciated.
I’ll keep everyone updated on her progress and let you know when she is finally home.
-Brighton (on behalf of Addison and Xan)
- Connie Biega
- Andrew Donnellan
- Alicia Wilson
- Janie Murray
- John Ejaife
Organizer and beneficiary
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