(Plymouth, Minn.) - When you were in high school, you may have had a teacher who assigned you to write an essay about the person who has had the most profound affect on your life. Perhaps you wrote about an actor or sports star, or maybe about your Mom, Dad or best friend.
Wynn Johnson of Plymouth, Minn., doesn’t remember who he would have written about when he was younger, but today it’s his niece, Angel Rose Skiles, and her parents, Lily and Bill.
“Lily and Bill are extraordinary people,” he said. “They had an extraordinary daughter and what they went through to keep her alive, when those in the medical community had predicted that she wouldn’t live seven years, is amazing. Theirs is a story that needed to be told.”
Angel Rose Skiles was born on May 2, 1972, and there were complications surrounding her birth. Her umbilical cord had been severely wrapped around her when she was born. Not only that, her mother had suffered toxemia. After being born, Angel was immediately rushed to an incubator. Her parents weren’t able to hold her for four days.
Lily and Bill eventually brought their delicate baby girl home, but her early years were plagued by problems. Angel Rose was eventually diagnosed with Rubinstein-Taybi Syndrome (RSTS), a form of retardation. She also developed Progeria, or rapid aging, and that wasn’t the only medical ailment the youngster faced. She also suffered from frequent seizures.
“There were so many times when Angel was young that Lily and Bill were told their daughter wouldn’t live through the night. She became that sick, and it’s amazing how they transformed their home, their vehicles, their entire lives to cater to keeping her alive,” said Johnson. “If the weather was bad, they wouldn’t go anywhere because they couldn’t take her out. They couldn’t go on vacation because she wasn’t feeling good. Everything was dependent on Angel. I think that kind of devotion deserves some attention.”
Johnson explains that Bill and Lily Skiles did everything in their power to make sure their daughter was happy and comfortable. They never once gave thought to placing her in a home for the disabled. They kept her home for all 39 years of her life, rarely leaving her side.
Sheila Grisim, Director of Fraser Home & Community Supports, says special needs families deserve significant recognition and support for the care they provide on a daily basis. Fraser is Minnesota’s largest and most experienced provider of autism services, and also serves children and adults with more than 60 types of mental and physical disabilities.
“As Angel’s family demonstrated, this commitment often goes far beyond that of caring for a child who is developing typically or certainly that of caring for an adult child without a disability. As families make the important decision to care for their loved ones at home, it is critical that communities embrace the entire family
with support. Each day often brings a new challenge to overcome as they devote their lives to ensuring the most healthy and meaningful life for their family member,” said Grisim.
“What I like about the beginning of the book is that the author kind of sets the stage for how the whole family handled this beautiful child and there is history about Appalachia. There are very interesting stories about the people and the community and all of it leading up to what Lily was and how she became the strong, wonderful mother of this child with inabilities rather than disabilities,” said Judith Palmateer of Amber Skye Publishing.
“I really think this book reaches out to any parent who has lost a child. Whether to illness or an accident, it can happen anytime. I think the message of this book is love your children, keep them near as Lily did,” said Johnson.