Help Stephen and Cindy in Their Time of Need

In 2016, immediately following one of Stephen's hospitalizations, Cindy went to her annual mammography and heard what every woman never wants to hear, "you have Cancer". Cindy's first instinct was to think, how am I going to take care of Stephen and still take care of me? Cindy had a lumpectomy followed by radiation and medicinal treatments while focusing on her son's needs. Over the years, Cindy diligently completed her treatments, despite the medication taking a toll on her ability to move without pain. Through the days, years and months, Cindy would say "caring for Stephen is what gets me through the day".

In October 2024, after eight years of successful monitoring, those horrible words were uttered once again. Only this time, it is your second time... Disbelief, fear, anger just cannot cover the emotional blow. The treatment this time will involve a much more intensive approach with multiple surgeries and rehabilitation. Cindy's surgeries will require a long course of recovery, medical oncology and follow-up procedure in 3-6 months. The needs of Stephen have not changed, he is bigger, stronger and still fully dependent upon Cindy and her husband. Cindy is once again faced with the reality of

how are we going to do this?

As a Mom of a medically frail child: In 2004 Stephen Ceglio was born with a rare GABA- 2 receptor genetic mutation. To date we only know of one other child with the same disability. This mutation is the cause of Stephen's multiple disabilities. Stephen suffers with Epilepsy and a seizure disorder, Cerebral Palsy, Global Delays and Static Encephalopathy. He is unable to speak, walk or care for himself in any way. His seizures have required many hospitalizations with eight of them requiring his being placed in medical comas. These hospitalizations severely effected his strength, stamina, and

coordination, making everyday a struggle for him and his parents.

Care routines with her husband, Peter, are so precise that they can finish each other's steps without a word while helping Stephen. Cindy's husband will now be taking care of both her and Stephen. He has been her rock, supporter and a heck of a listener, but this is

a toll on him as well. As Stephen gets older, he will be timing out of programs, benefits and assistance. Over the years, there have been many home modifications to improve Stephen's quality of life, never thinking that these would now become needed for Cindy, too.