Short life of special needs child touched many


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Phyllis Hoppes was inspired to write a children’s book after caring for her special needs child for 19 years.

SENIOR LIFE photo

Learning the profound joy of caring for a special needs child is at the heart of the children’s book “How I Became a Superhero” by Phyllis Hoppes of Titusville. It was published in 2018 by Page Publishing Inc. of New York.

The book was Hoppes’ way of memorializing her youngest child Ashley, who was a special needs child. At age 3, Ashley was diagnosed with mitochondrial disease and cri du chat syndrome. Although the prognosis was for her to live to about age 8, she lived until age 19. The family’s other two kids, all born seven years apart, are typically abled.

Phyllis and her husband Rick took turns providing 24-hour care throughout while both worked to help cover a mountain of medical expenses. Ashley could never walk, never eat by mouth and could not go outside for fear of getting sick.

“I started working on it two years after she passed away. She was just a neat kid — full of energy. The most wonderful little girl and she was terminally ill. You could have the worst day in the world and you could come into her room and she would brighten you up,” she said.

Ashley weighed about 35 pounds — about the size of a 4-year-old.

“She basically was my baby that never grew up. We kept her at home and kept nurses and all the medical equipment we needed in our house. We took care of her as best we could.’’

Mentally, she was about age 3 but she could understand a lot. She spoke about 20 words and the rest she used basic sign language. She could sign, I love you and angel.

“She taught us more about unconditional love and about accepting. I learned so much from that little girl. I truly believe she was my gift from God. I think her brother and sister learned a great deal from her, too.”

“Writing the book helped me find my new normal. I wanted to put her brother and sister in there as superheroes because they were,’’ she said.

“Special needs kids need to have superheroes: people who just want to read a book to them or sit down and talk or play with them and treat them as a typical kid. They laugh and giggle and have fun.”

Hoppes’ follow-up book is about Ashley’s service dog, a beloved Saint Bernard named Mo Mo.