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Caitlin's Wish - A Book for Children with Sick or Disabled Family Members

Author: Disabled World

Published: 2010-11-17

Synopsis and Key Points:

Caitlins Wish by Victoria Taylor is a storybook written for children who have a family member friend or relative that has a form of disability or is sick.

Main Digest

Caitlin's Wish, written by Victoria Taylor, is a storybook written for children who have a family member, friend, or relative that has a form of disability or is sick.

The storybook presents a fairytale that is both magical and contains a twist; it enables young caregivers to view their role from a new perspective while helping those whose lives are not affected by disability to gain insight into what it is like to be a young caregiver. Magnificently written, Caitlin's wish is highly-recommended by those who have read the book.

Victoria wrote the book for her daughter, Adele-Caitlin, upon discovering that she was experiencing difficulties with coming to terms with her father's disability. Adele-Caitlin was a mere two years old when her father was diagnosed with a form of rare brain condition known as, 'Intracranial Hypertension,' or IH. At the age of two, Adele-Caitlin simply accepted the situations she found herself in. After she reached school age, she began comparing her own life with those of her peers and realized that her life was different from theirs. She felt isolated and sad because of the situation she found herself in, yet Adele-Caitlin was too young to reach for support.

Victoria was inspired to try and make a difference; she wrote Caitlin's Wish with young caregivers in mind. The book assists them in finding the positive elements in their lives, helping them to avoid dwelling on any negative aspects. The book her mother wrote has helped Adele-Caitlin to view her own life from a new perspective and to realize that illness and disability can affect anyone at anytime, or at any point in their life - as well as the fact that it is no one's fault. Adele-Caitlin has learned to think of things that her father could do now instead of focusing on things he cannot. She seeks positive things in her life instead of negative ones. Caitlin's Wish is wonderfully illustrated by a highly-talented artist, Claire Wiles.

Caitlins wish book
Caitlins wish book

Victoria is also involved in the IH awareness campaign. She states, "IH is an invisible illness where the person looks, 'fine,' when they are not" Older names for IH, or Intracranial Hypertension include, "Pseudotumor Cerebi," and, "Benign Intracranial Hypertension." The majority of people have not heard of the disability, to include a number of people involved in the medical profession. The term, "Intracranial Hypertension," very literally means that cerebrospinal fluid (CSF) pressure within a person's skull has become unacceptably high. Chronic intracranial hypertension (IH), is a form of serious neurological disorder that may cause vision loss, blindness, severe headaches, as well as life-altering disability. No two people experience the disability in the same way, something that makes IH a condition that is difficult to manage. People may develop chronic IH at any point during their life, and there is currently no cure for this disability.

Intracranial Hypertension can sometimes be caused by an existing medical condition, although it many times occurs without any known cause at all. When IH occurs without a known cause it is referred to as, 'Idiopathic IH,' and is considered to be a rare illness. IH affects approximately one in every one-hundred thousand people, although the rate of occurrence may be as high as one in five-thousand. Millions of other people experience a condition or disease such as a stroke, kidney failure, or a traumatic brain injury that can involve IH.

There are no medications in existence specifically developed for the treatment of IH and treatment options for people with the disability are limited. For some, medication might help to control the intracranial pressure, but for others the only choice is to endure a painful form of surgery involving insertion of a shunt that drains the excess fluid from their brain. Shunt surgery presents a fifty-percent success rate, meaning that many of the surgeries involve risks. If the person's vision is at risk, they often have to undergo optic nerve surgery with the goal of saving their vision as well. The symptoms of Intracranial Hypertension (IH) include the following:

Malaise Fatigue Back pain Dizziness Photophobia Sore/stiff neck Noise sensitivity Light headedness Severe headaches Optic nerve swelling Vision loss and/or blindness Memory/cognitive problems Pulse - synchronous tinnitus

Chronic IH is a life-altering form of disability. Everyone who has IH experiences the disability in a unique way, something that makes Intracranial Hypertension difficult to manage.

What follows are comments by readers of Caitlin's Wish from the Wake up Celebrity Author Competition of July, 2010. The storybook is dearly loved and appreciated by many readers, who feel the book is very worthwhile.

AMAZING!!! Thank you for writing this book. My daughter is now 11 but I've been disabled since she was 3 and like your daughter she was too young for help etc. We were lucky, she had an amazing teacher who helped her when she started school. But still now she has days when she struggles. I try to keep her life as normal as I can but its hard. This book will help so many children in the same situation. It helps them in a gentle, kind, way and not in your face, big words, way that so many kids get these days. Well done and thank you.

A great way of raising awareness of issues which so many children (and adults) face and tackling them in a practical and enchanting way. Caitlin's wish is an enchanting book which has some great illustrations and its an excellent book for all ages

This is truly a book that all children with either a sick parent or sibling should have. It's written in whimsical form, that young children can understand. I'd like to see a copy of this book in children's hospitals, in there common room.

This book speaks to those of any age, it reaches anyone effected by any illness in the family. It is a must for all households to share and help understand how to make the best of and get the most out of life under any circumstances! Beautiful and well written, it also hits home with me!! Amazing, book in every aspect.

I wish this book had been written when I was a child dealing with my father's cancer and now with having IH it's wonderful to know that she is teaching young children about caregiving.

I have a friend with IH and my daughters couldn't understand why a doctor took her away when she was poorly, she lent me this book that she read to her own daughters and it helped my girls understand why she was poorly.

This is a great book for kids facing health issues with their parents. I have given several copies to my best friend's kids whose dad was diagnosed with cancer this past January. He is fine now but they have had a tough time dealing with everything. Their mom found, just like Victoria did, there aren't any books for kids dealing with this subject.

This is an inspirational story that my wife was privileged to be asked to illustrate. Now that this book has been published, there is no doubt that it will go on to help other children in similar situations that have a family member that is ill.

This is an extremely well put together resource for children who have someone in their life that suffers from conditions in which they don't understand. Children, in this day and age, have tons of stuff they need to deal with to get through life, and to have to care for a loved one and not understand the full concept of it, is hard for any child. This book will help them understand that not are they not alone, but they are strong enough to handle life as it comes to them and adjust to life accordingly.

I have the same neurological disorder that the author's husband (Caitlin's father) has - Intracranial Hypertension. The book hits so close to home and it's been a blessing to have to give to family/friends to read. Absolutely love it - hope I am able to meet Victoria (& Family) in person one day.

25% of the royalties are going to Crossroads Care (www.crossroads.org.uk) and the IH Research foundation (www.ihrfoundation.org). Victoria is very involved in the IH Awareness Campaign.

For more information please go to www.caitlinswish.co.uk For more information on IH, please go to the IHRF's website. www.ihrfoundation.org

"ňúCAITLIN'S WISH" by Victoria Taylor. Illustrations by Claire Wiles. Caitlin's Wish ISBN Number 978 - 1 - 4490 - 7124 - 0

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