An Educator’s /Parent’s Guide: Meeting the Needs of the Ehlers-Danlos Child

Created by the Ehlers-Danlos National Foundation, this guide gives an overview of Ehlers-Danlos, what medical situations may be encountered in school, steps for academic success and considerations for 504 plans. The Parents section includes tips on advocating for your child. Also available for download – An Educator’s /Parent’s Guide: Meeting the Needs of the Ehlers-Danlos… More An Educator’s /Parent’s Guide: Meeting the Needs of the Ehlers-Danlos Child

Because Of Anya

Book Cover, Because Of Anya

Ten year old Anya wears a wig due to Alopecia. This is as much as story of friendship between Anya and Keely, who wants to help Anya and learns to stand up to her other friends, as it is of Anya’s coming to terms with her hair loss. (ages 8-12)

Behind My Smile

This book has been written jointly by nine–year-old Bethany and her mum Julie. It highlights the devastating effect that Juvenile Idiopathic Arthritis had on Bethany’s life. In all, 26 of her joints were affected-from the jaw to the ankle. After a traumatic first year Julie could take no more of Bethany’s plight when given the… More Behind My Smile

Bendy Wendy and the (Almost) Invisible Genetic Syndrome: A Story of One Tween’s Diagnosis of Ehlers-Danlos Syndrome / Joint Hypermobility

This book was written for families, children, and tweens that find themselves in a position of understanding and explaining, in basic terms, Ehlers-Danlos Syndrome and the issues associated with it.  It was thoughtfully developed by bone and connective tissue disorder expert Dr. Brad T Tinkle and his award-winning children’s book author wife, Laurren Darr to… More Bendy Wendy and the (Almost) Invisible Genetic Syndrome: A Story of One Tween’s Diagnosis of Ehlers-Danlos Syndrome / Joint Hypermobility

Both Sides Of The White Coat: An Insider’s Perspectives On The Critically Ill Child

“This book is the result of seven years of fear, uncertainty, and hardship as a family has attempted to cope with a child’s unexpected life-threatening illness. This story differs from that of many other families coping with childhood illness in that we as parents already had intimate “insider” knowledge of serious illness. I was a… More Both Sides Of The White Coat: An Insider’s Perspectives On The Critically Ill Child

Brave Just Like Me

Book Cover, Brave Just Like Me

Lexie has a chronic health condition, and spends a lot of time having test and going to the doctor. She knows how scary it can be sometimes. “be brave and know that you are not alone” is her message for other children.

Building The Healing Partnership

An empathetic and practical guidebook relevant to the families of chronically and severely ill children and to those who care for them. Observes and evaluates from the inside, with intimacy, understanding and compassion. Weaves together brief vignettes to teach.

Chronic Kids Constant Hope: Help And Encouragement For Parents Of Children With Chronic Conditions

Book Cover, Chronic Kids Constant Hope: Help And Encouragement For Parents Of Children With Chronic Conditions

With the heart and understanding of moms who are living it themselves, Elizabeth Hoekstra and Mary Bradford offer encouragement and help for fellow parents of “chronic kids.” If you were blessed with such a child, you are not alone. This is a very faith based book that addresses specific issues such as dealing with emotions,… More Chronic Kids Constant Hope: Help And Encouragement For Parents Of Children With Chronic Conditions

Complete Tubefeeding

This helpful handbook provides comprehensive and compassionate coverage of all aspects of tube feeding and nutrition via tube, including: The different types of enteral feeding tubes, their placement, use and care, with loads of useful tips and tricks to make living with a feeding tube easy as can be. Tube nutrition, with sections on commercially… More Complete Tubefeeding

Conquering Your Child’s Chronic Pain: A Pediatrician’s Guide for Reclaiming a Normal Childhood

This book reveals what parents can do to alleviate their child’s pain on a daily basis. Based on more than 30 years study, Dr. Zeltzer offers ways to take control of the pain and ultimately become pain-free. She explains how to tell if the pain has become chronic, soothe the nervous system, reactivate the body’s… More Conquering Your Child’s Chronic Pain: A Pediatrician’s Guide for Reclaiming a Normal Childhood

Coping With Crohn’s Disease

Crohn’s Disease is a chronic and incurable gastrointestinal inflammatory illness of unknown origins. With this book, discover how to maximize your relationships with medical professionals and make informed decisions about medication and existing surgical options while you deal with Crohnis Disease. Discover strategies for coping with the daily physical affects of the illness, including how… More Coping With Crohn’s Disease

Daddy’s Story: An Introduction for Younger Children to Learn about a Parent’s Multiple Sclerosis

This book encourages parents with multiple sclerosis to begin the conversation about the diagnosis and ongoing implications of MS with young children. This 16-page book is geared for children ages three to seven. You can borrow from our library or download  – Daddy’s Story: An Introduction for Younger Children to Learn about a Parent’s Multiple… More Daddy’s Story: An Introduction for Younger Children to Learn about a Parent’s Multiple Sclerosis

Digging Deep: A Journal for Young People Facing Health Challenges

When a child is seriously or chronically ill, parents, friends, and other supportive loved ones want to help. This beautiful guided journal for kids and teens with health challenges offers young people the empowerment they need to take an active role in their emotional health by working through dozens of relevant and meaningful exercises

Easy For You To Say: Q & A’s For Teens Living With Chronic Illness Or Disability

Profiles the lives of uniquely challenged teens as they work hard to make sense of the world and their places in it. The questions they pose are frank and courageous, many include street language that teens can identify with and readily understand. The issues front and center in their lives are addressed, such as family, doctors… More Easy For You To Say: Q & A’s For Teens Living With Chronic Illness Or Disability

Eternally Gluten-Free – A Cookbook of Sweets and Inspiration, From a Teen!

Eternally Gluten-free is a cookbook full of sweets, from breakfast, to drinks and desserts. The book also includes a short about living with Celiac disease.“If you or a family member has to eat gluten-free, ‘Eternally Gluten-Free’ will show you what you’re not missing. Cura’s inspiring story and tasty dessert, drink and breakfast recipes will show… More Eternally Gluten-Free – A Cookbook of Sweets and Inspiration, From a Teen!