Albany County Correctional Facility for Children's Benefit Albany NY

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.

Update: 'AJ' Ballard, age 2 Using His Ventilator Less But Received Epilepsy Diagnosis

AJ, age 2 resides in Waterford, NY

In July of 2012, AJ was further diagnosed with epilepsy and is currently working on getting the seizures under control. He will require braces for his spastisity on his arms and legs, tests will determine this cause. He is still fed via g-tube, but is working more with speech in order to get him to accept new tastes and textures. For up to 4 hours/ day he is off of his portable ventilator, a huge improvement from 24/7 for which mom and dad are very happy about! 

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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.

Introducing Alexander 'AJ' Ballard, age 1

Alexander "AJ" age 15 months from Latham, NY

AJ was 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.

AJ is currently being fed via a G-Tube. He has a portable ventilator requiring suction due to aspiration. Mom said, 'AJ is always smiling and laughing...Now that he is home, he is getting stronger and bigger every day'