My name is Beverly Hasty. My great-grandson has recently passed away after a very long battle with Menkes disease. Menkes is a copper deficiency that affects the muscles and organs; it is a fatal genetic disorder. Most children with it pass away at a very young age, around 3. Raymond, with the help of his nurses and team of doctors, made it to see the age of 9.
Through the years, Raymond became a regular at Children’s Hospital in Pittsburgh and had most of the departments in Mom and Dad’s phones. He had countless surgeries and more near-death and death experiences than anyone could ever imagine. He survived 3 bouts of pancreatitis, never got COVID, and always had everyone everywhere on their toes. Ultimately, due to the Menkes and the treatment that helped prolong the process, his little heart couldn’t take anymore.
This is a very special boy who was and still is very well loved. The family and I took out loans to add onto my house to put a handicap room for their special needs boy. Make-A-Wish helped to put countertops in, and they were going to move in here; to do this, we took out loans. Raymond passed before they could move in. Raymond passed in Children’s Hospital due to his Menkes; he became septic fast.
Most of the funeral bills are paid for. Children’s Hospital covered some of the expenses. The urn and the obituary are what’s left. The urn and obituary cost $450. The family was going to use his last SSI check to cover it, only to find out because he passed, Social Security took back the payment, leaving the family to try and find other means. Any donations will be used to cover the cost of the funeral first, and then any remaining will be used to pay off the loan and Home Depot and help them to move here.