This is my uncle, Jorge Rolando Ake May, he is 52 years old and the youngest of 11 brothers and sisters. He was born with a cerebellum malformation that affects his movement called Dandy-Walker. This abnormality causes a build up of fluid that increases the size of one's head and can often result in problems with movement, coordination, and other neurological functions. Alongside, he was also diagnosed with Agenesis of Corpus Callosum (ACC), this is a rare disorder that is present at birth, in which an area of the brain that connects the two cerebral hemispheres is missing. Both of these conditions have caused him to also have been diagnosed with Structural Epilepsy.

 

He was recently hospitalized because he had no movement or strength in his upper and lower limbs. The doctor explained that they had found crystallized cyst/ calluses that drained to his spine from that liquid in his head caused by the Dandy- Waker, due to the constant seizures. These cysts/ calluses were preventing the signals from the brain to reach other parts of his body. He underwent surgery for the removal of these cysts/ calluses with the possibility of 20% expectation of being able to fully recover.

 

Unfortunately, The surgery was not as successful as they hoped. My uncle Jorge is now in a state of paralysis from the waist down and minimal large motor movement from the waist up. He is now needing around the clock assistance. Unfortunately, he has no children or spouse to assist and my grandfather who used to care for him passed away in 2020. Yet, he is in high spirits. As of now, all of his brothers, sisters, nieces, nephews, and cousins have been trying to assist and help the best they can, as we don’t want him to ever feel alone as we are a big and united family, but the medical bills are adding up and having to pay for around the clock assistance is becoming difficult.

 

Close to $40,000 dollars is hospital bills alone and an average of $300 weekly in medical care. We know that these are difficult times for everyone, but we are asking with sincere need and hope that if you are able to help, any dollar amount helps. We appreciate the time and support.