5 Year Old's Rare Diagnosis Leads to Seizures, 24/7 ventilator and Complete Non-Mobility!

 

Picture by: Christina Florada Photography 

"Alexander "AJ" Ballard is 5 years old now! A lot has changed in the past few years. Aj's diagnosis of epilepsy led us to dig deeper and we found out that he has MeCp2 Male. This is very similar to Rett syndrome in females--and is extremely rare in boys. This condition is currently non-reversible. AJ is now on the ventilator 24/7 and is completely non-mobile. Currently, his seizures are under control, but we have our moments. He also has been having issues with his heart. His heart rate is irregular at times, and it can be slow too. We have to monitor him all the time for his seizures and heart rate. Because of his immobility, AJ now has scoliosis and a dislocated hip and has to wear a brace to help slow down his spinal curvature."- Update by AJ's Mom, Jennifer

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AJ was previously diagnosed with Chiari Malformation, Type 1- a condition where the lower back of the skull is too small or misshaped causing crowding of the brain and pressing it down against the spinal cord. He underwent surgery to make room in his skull and spent the last 2 months of 2011 in the hospital recovering. Doctors have not determined whether there is permanent nerve damage nor the extent.