Alex was an adorable, sweet, and slightly hyper-active three-year old with charming brown eyes, puffy cheeks, and the inability to pronounce my name--which was absolutely adorable. Yet only two years later, he drastically changed.
Alex began having seizures and was soon diagnosed with complex partial seizures. While his doctors were able to keep him stabilized for many years, this fall his arm began shaking uncontrollably. After several visits to his doctor and readjusting his meds, Alex's mother, Melissa, decided it was time to take him to Arkansas Children's Hospital, where he was immediately admitted in the PICU, and he's been there ever since.
Alex has been in the PICU for 32 days (as of 12-16-2014), and still, his doctors do not know what is wrong with him.
Since November 13, 2014, Alex hasn't had anything to eat or drink; he's been purely on a ketogenic diet, which is often used in weight loss diets and to help control episodes of epilepsy. As a result, he's lost a lot of weight. He currently weighs in at 96lbs, which we all know is not a healthy weight for an eighteen-year-old boy.
In only 32 days, Alex has gone from an uncontrollable shaking in his arm to not being able to stand up, sit up, or even lift his own head. He barely even has the strength to raise his arms. The twitching that brought them to Children's has moved to his right side now, and his left side is almost paralyzed, with little to no movement.
At this point, Alex's doctors are testing for Batten Disease and pushing for genome sequencing testing. While Melissa hasn't yet decided how she feels about the testing, which I can imagine is quite expensive, she refuses to believe that it could be Batten Disease, which she describes as "something purely evil." I, myself, am not familiar with Batten Disease, but a quick Google search turns up a horrifying description: "a rare, fatal autosomal recessive neurodegenerative disorder that begins in childhood."
While I can't imagine what Alex has been through in the last month, I can, as a mother, somewhat relate to Melissa. The emotional and physical toll alone must be exhausting, and the feeling of helplessness as she watches her eighteen-year-old son lie nearly motionless in a bed would be taxing to say the least. However, Melissa is a single mom and has another child as well, and with the extent of their stay at Children's, I can only imagine the financial burden she will bear...alone.
This is where we need to step in. We need to find Answers for Alex. We need to relieve some of the stress placed upon his mother, so she can look at his doctors and say what all mothers should be able to say, "Do whatever it takes, and never give up."
Alex is only 18; he loves wrestling and even got to meet John Cena this year. He's a young man with this entire life ahead of him, and I'm sure, just as Cena's shirt reads, that Alex will Never Give Up.
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