A Heartbreaking Journey: A Mother’s Tale of Loss and Love

Two days ago marked the two-year anniversary since her son came into the world. This year, however, has been particularly challenging for her. She lost her daughter this year. She only had 40 days with her little boy, and the experience has been incredibly devastating. Her son has been to three different hospitals, and she was only able to hold him about 20 times. He suffers from an extremely rare condition, with only three children born with it in a year. His condition manifests as a unique form of hypotonia, where he was initially unable to move and eventually became unable to breathe on his own.

Eventually, she heard someone mention that he might have to be transferred to a hospice. It was then that she made the heart-wrenching decision that her family would cease life support when he was ready. Given his fondness for baths, she decided to allocate the entire day to his father so that he could spend quality time with him. All she wanted was to take him to the swimming pool. However, when they reached the changing rooms at the pool, she noticed the color of his skin. He chose his own time to depart, leaving her longing to have done more for him.

During his stay in the medical facility, she was informed that he couldn’t be sent home with a CPAP machine, as it wouldn’t provide a good quality of life for him. Recently, she had been planning a vacation to Turkey, and when filling out the airline’s questionnaire about additional accommodations, she mentioned the need for a CPAP machine. It perplexed her why others could bring CPAP machines on vacation while she couldn’t even bring one home for her son.

I apologize for the lengthy story. Here are some pictures of her little boy.