Have you ever read a book and because of its subject you really, really wanted to like it but then you didn't? That is how I feel about Old Before My Time: Hayley Okines' Life with Progeria by Hayley and Kerry Okines.
Hayley has Progeria. It is a rare, fatal genetic condition characterized by an appearance of accelerated aging in children. Although they are born looking healthy, children with Progeria begin to display many characteristics of accelerated aging at around 18-24 months of age. Progeria signs include growth failure, loss of body fat and hair, aged-looking skin, stiffness of joints, hip dislocation, generalized atherosclerosis, cardiovascular (heart) disease and stroke. The children have a remarkably similar appearance, despite differing ethnic backgrounds. Children with Progeria die of atherosclerosis (heart disease) at an average age of thirteen years. http://www.progeriaresearch.org.
Hayley has an incredible life story to be told by herself. But, only some chapters are written by Hayley. The majority of the book is written by her mother, and that is why the book was a difficult read. Hayley's mother made the book about Hayley's mother. You may read it and get a different feel for it. But, I found myself skimming through "mom's chapters" but actually reading Hayley's chapters. For instance, the constant arguing of her mother and ex-husband was nerve-racking.
Hayley is adorable, and brave. She has been among the first children to participate in drug trials. That takes courage. She certainly has a maturity beyond her age - even if the drug trials won't help her prolong or improve her own life, she hopes her participation will help others. Way to go, Hayley! http://www.hayleyspage.com.
I was glad to have read Hayley's stories. I hope to hear more by this unique little girl. I certainly recommend learning about Hayley's life, but I can't freely recommend this particular book....at least, not all of it. When I finished, instead of forwarding the book to my mother, I just returned it to the library. And, that's my difficulty with this book.
Hayley has Progeria. It is a rare, fatal genetic condition characterized by an appearance of accelerated aging in children. Although they are born looking healthy, children with Progeria begin to display many characteristics of accelerated aging at around 18-24 months of age. Progeria signs include growth failure, loss of body fat and hair, aged-looking skin, stiffness of joints, hip dislocation, generalized atherosclerosis, cardiovascular (heart) disease and stroke. The children have a remarkably similar appearance, despite differing ethnic backgrounds. Children with Progeria die of atherosclerosis (heart disease) at an average age of thirteen years. http://www.progeriaresearch.org.
Hayley has an incredible life story to be told by herself. But, only some chapters are written by Hayley. The majority of the book is written by her mother, and that is why the book was a difficult read. Hayley's mother made the book about Hayley's mother. You may read it and get a different feel for it. But, I found myself skimming through "mom's chapters" but actually reading Hayley's chapters. For instance, the constant arguing of her mother and ex-husband was nerve-racking.
Hayley is adorable, and brave. She has been among the first children to participate in drug trials. That takes courage. She certainly has a maturity beyond her age - even if the drug trials won't help her prolong or improve her own life, she hopes her participation will help others. Way to go, Hayley! http://www.hayleyspage.com.
I was glad to have read Hayley's stories. I hope to hear more by this unique little girl. I certainly recommend learning about Hayley's life, but I can't freely recommend this particular book....at least, not all of it. When I finished, instead of forwarding the book to my mother, I just returned it to the library. And, that's my difficulty with this book.