Alex was diagnosed with Mitochondrial Encephalomyopathy, before the age of 3. At age 12, he is thriving but life for the most part has been extremely difficult. Basically most of Alex's organs have been compromised in some way by this progressive and life threatening disease. He cannot sit unsupported and is considered nonverbal. Alex has a GJ feeding tube, hypoglycemia, respiratory issues, numerous problems with his vision, gastroparesis, scoliosis, seizures, reflux, and a movement disorder that keeps him in constant movement. Most of Alex's life has been spent in some sort of therapy, between speech and feeding therapy, occupational therapy and physical therapy. His body relies on 22 different medications and vitamins a day, some of them 4 times a day. Thankful for an IV port placed during an inpatient stay last year, he now does weekly D10 infusions at Levine Children's Hospital to make up for fluid loss, mito crashes and energy reserve.
To make things more complicating, Alex had scoliosis surgery March 31, 2014. He had a 92 degree curve in his spine at the time. Sometime between the first couple of days following surgery, Alex suffered a massive stroke to the right side of his brain. Since the stroke, Alex's Mom and Dad are not sure what is harder on this kid, the stroke or mito. But despite all odds, Alex has a smile that will rock your world. This last year and a half, Alex has spent doing intense rehab in an outpatient therapy clinic. Following stroke, Alex lost his ability to swallow, could no longer stand in a stander, cannot move his left leg, developed tremors, lost all head control and so much other stuff. But he is continuing to get stronger.
Mito has made rehab 10 times harder than it really should be. Alex has taken 2 steps forward, one step back over and over. And if you've seen this kid on Facebook over the last year, he is usually smiling like no other. That is how this family has survived. This kid loves life, loves people, and loves to make people happy. He has an amazing service dog, CAMDEN, through paws4people. Rarely will you see one, without the other. And the two of them together are living life to its fullest. With the support of friends and family and love, hope, and faith, Alex continues to persevere.