7-year-old Alayja listens attentively in her afternoon class. She’s seated in the front row, where she always sits, and there’s nothing particularly unusual about this day. Except that she feels inexplicably tired. Last night she got plenty of sleep; this morning she felt fine. Her gaze wanders out the window, at the beautiful spring sunshine, and she starts to nod off. As soon as she falls asleep she wakes up again, clears her throat and sits straighter in her seat, struggling to pay attention to what her teacher is talking about. She picks up her pencil to take notes, and all of a sudden she’s leaning forward… resting her head on her desk… and falling asleep…
For two weeks she has been feeling exhausted, under the weather, and not herself. One April afternoon, her mom Angela rushed her to the E.R. after realizing she had a high fever and her feet had turned bright red. The E.R. doctors were just as mystified as Alayja herself. She was coming back negative for every test. Her white blood cells were working hard to fight off an infection that no one could detect. It appeared her body was fighting itself.
They could not have known then that this was the beginning of the end of the life Alayja had known.
A week after her trip to the E.R., Alayja was sitting in a recliner doing her homework. She said something to her mom, and as she did, her eyes widened in fear: her words were coming out slurred. Startled, she tried to lift herself out of the recliner… and realized she physically couldn’t. Her lower body was non-responsive. She was frozen in the chair. Alayja started screaming.
After that, “everything in her whole body shut down.” Alayja was rushed to the E.R. when she stopped breathing and had to be revived. When she woke up, all she could do was blink her eyes.
Following extensive testing, Alayja was diagnosed with Acute Disseminated Encephalomyelitis – with an unknown cause. To put it simply, a sudden inflammation occurred in her brain and traveled down her spinal cord. Those three words caused irreversible paralysis from Alayja’s chest down. “When I heard that,” Angela told us, “my mind went blank.”
Telling Alayja was the most difficult thing Angela had ever had to do. Weeks before, Alayja had been active and carefree. She loved playing basketball more than anything else. Now Angela had to tell her daughter she would never play again. In the months that followed, doctors diagnosed Alayja with Neuromuscular Scoliosis and Transverse Myelitis, a rare inflammatory disease causing injury to the spinal cord. “We read about it together,” Angela told us.
With her support system of her family, single mom Angela and brothers Elgin and Aurelio, Alayja had the strength to cope with her future. “Sure, she has moments of depression. But she’s a force. She got through it.”
Now 13, Alayja has accepted that she will never walk again. She accepted that for a reason that doctors still do not understand, her body shut down, and an irreversible “event” took away her abilities and independence. She has accepted the fact that she will face obstacles, surgeries, and physical therapies every day for the rest of her life. But the one thing she was not willing to give up was basketball. She still wanted to play. She did research and found out about the Miracle League which is designed specifically for special needs athletes. But she needed a way to transport her wheelchair and her gear…
Mom Angela went to her nearest dealership and inquired about renting wheelchair-accessible vans. An employee named Carlos overheard her request and asked her about her daughter. When Angela told him her story, he asked if she’d ever heard about a non-profit called Chive Charities. She said she hadn’t. They might be able to help you… he started…
At the sound of those words Angela felt a flutter of hope in her heart.
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