Not All Heroes Wear Capes by Jono Lancaster

‘Finding self-acceptance hasn’t always been easy. I was abandoned at birth with a facial difference, and as I got older, I began to hate my face and the world I lived in.

Gradually, through trial and error, random moments with strangers, and some tragic haircuts, I’ve found self-love and happiness.

This book is the story of how I found my way out of difficult times, and how you can do the same.’

Jono Lancaster was born with Treacher Collins Syndrome – a condition that affects facial appearence – and at only two weeks old, he found himself in foster care. In his remarkable story, Jono shares the highs and lows of his journey and how he turned his differences into his greatest strengths.

Inspirational, empowering and moving – this is an extraordinary memoir with a powerful message: you are strong enough to become your own hero. (Cape optional.)

Buy book or download the Kindle version, here.

Treacher Collins Syndrome

Diary of a Beautiful Disaster by Kristen Bartzokis

Born with Treacher Collins syndrome, a facial abnormality, Kristin learned at an early age the importance of strength–strength when confronted with multiple surgeries, strength when confronted with stares and questions, and strength when confronted with the constant knowledge that you will never look, or be, like everyone else.

Kristin Bartzokis’ life story is one of achievement and inspiration, an example of an unbreakable spirit and unwavering fortitude. No matter what life has thrown at Kristin, she has turned challenges into triumphs and used obstacles as stepping stones. Diary of a Beautiful Disaster empowers readers to embrace their own uniqueness and boldly go forth into the world being exactly who they are. Kristin reminds us that although life can be complicated and messy, it is always, above all, beautiful.

Buy book or download the Kindle version, here.

Treacher Collins Syndrome

Download the Educator Discussion Guide, here.

How I Learned to Rock My Life: The Peter Dankelson Story by Peter and Dede Dankelson

Peter Dankelson’s story is a reminder that circumstances don’t define your life; how you react to them does. You will be inspired by how Peter overcomes adversity with a positive attitude and a loving family. You will be motivated to choose courage over fear, embrace what makes you different, and reflect on what’s important in your life. Readers will battle with Peter through his thirty-six surgeries, laugh with him as he searches for an ear store, and share in his excitement when he takes the stage with Buckcherry, Jared James Nichols, and others. Over half a million social media followers have found inspiration from Pete’s Diary, a company inspired by Peter’s life. This book is both Peter’s story and the journey of how Pete’s Diary evolved from his birth in 2000 to his career as a guitar player.

Buy the book or download the Kindle version on Amazon. Read more about it on Peter’s website.

Goldenhar Syndrome

How I Learned to Rock My Life by Peter and Dede Dankelson

In I’ll Pray for You and Other Outrageous Things Said to Disabled People, Hannah Setzer volunteers to go first and say the things that we all think, but rarely say. Hannah has lived her whole life as a disabled woman and is here to share her story, though don’t think for a second that this is inspiration porn. In fact, Hannah’s disability is the least interesting thing about her!

Hannah is a rebellious writer, a disability rights activist, and a movement enthusiast. She’s best known as the creator of “Feeding Tube Fitness,” where she often overshares most aspects of her life. She is the owner of Hannah’s Handcrafted, a small business making and selling high quality elderberry products. She’s a big dreamer and most recently founded Growing Inclusivity, a nonprofit aiming to build an accessible playground in Virginia. She lives on a mini farm in Virginia with her husband, her partner in all things, her four boys, who are her biggest fans, and her ever growing menagerie of loyal animals. She is here to instill hope that you, too, can chase your dreams (and your chickens) if you want to. This book of essays from her life aims to do just that!

Buy the book or download the Kindle version on Amazon.

Watch author interview on Instagram.

Cystic Hygroma

A Face for Picasso: Coming of Age with Crouzon Syndrome by Ariel Henley

“I am ugly. There’s a mathematical equation to prove it.”

At only eight months old, identical twin sisters Ariel and Zan were diagnosed with Crouzon syndrome — a rare condition where the bones in the head fuse prematurely. They were the first twins known to survive it.

Growing up, Ariel and her sister endured numerous appearance-altering procedures. Surgeons would break the bones in their heads and faces to make room for their growing organs. While the physical aspect of their condition was painful, it was nothing compared to the emotional toll of navigating life with a facial disfigurement.

Ariel explores beauty and identity in her young-adult memoir about resilience, sisterhood, and the strength it takes to put your life, and yourself, back together time and time again.

Buy the book or download the Kindle version on Amazon.

Crouzon Syndrome

I’ve Just Seen a Face: A Practical and Emotional Guide for Parents of Children Born with Cleft Lip and Palate (Year One and Beyond) by Amy Mendillo

Hearing the news of a baby’s cleft lip and palate can feel overwhelming for a parent. Amy Mendillo, health writer and cleft parent, has been there. Now, she has produced the most comprehensive guide ever written for parents of children born with clefts. Based on extensive interviews with fellow parents and cleft-team pros—plus exhaustive research from medical literature—I’ve Just Seen a Face contains essential medical information, emotional insights, and insiders’ tips to help parents with countless decisions, big and small, during the intense first year of treatment and beyond. It is also full of relatable stories that will help parents feel more supported and less alone.

Buy the book or download the Kindle version on Amazon.

Watch author interview on YouTube.

Cleft Lip and Palate

Children With Facial Difference: A Parents’ Guide by Jeanne McDermott

The riveting true story of a child, a family, and life on the outskirts of normal.
When Jeanne McDermott’s second child, Nathaniel, was born with Apert syndrome—a condition that results in a towering skull, a sunken face, and fingers webbed so tightly that hands look like mittens—she was completely unprepared for it.

In this extraordinary memoir, McDermott calls on her dual roles as science journalist and mother to share her family’s traumatic yet enriching experience. Though McDermott and her family had to endure Nathaniel’s harrowing surgeries and the stares and comments of strangers and well-meaning friends, they were also transformed by the boy’s amazing strength and exuberant personality. With grace, courage, and humor, McDermott shows readers how a child with a rare syndrome can illuminate “a whole new way of seeing, not simply him and others, but ourselves.”

Buy book, here, on Amazon.

Facial Shift: Adjusting to an Altered Appearance by Dawn Shaw

Your face, and your life, has been radically altered. Accident, military injury, medical condition…the result is the same. You are now having to confront the world with a “different” face, and understandably this has wrecked your self-image and undermined your confidence, leaving you with a thousand questions and concerns including:

•What should I do when people stare at me?
•What are my medical options?
•Wouldn’t it be easier if I just stayed home and didn’t go anywhere?
•And most significantly, How will this physical change affect current and future relationships?
•Will anyone ever be able to love me?

In Facial Shift, author Dawn Shaw addresses those questions and more. Dawn was born with a rare tumor, the removal of which left her face half-paralyzed. She has lived her entire life, nearly half a century, with a different face, yet has been able to lead a happy and productive life. She doesn’t allow her different face to stop her from interacting with the world, and neither should you. A practical, but empathetic book for those grappling with a facial difference.

Buy book or download the Kindle version, here.

Facial Tumor/ Paralysis

Our Altered Life by Charlene Beswick

After a healthy twin pregnancy, Charlene and Mark were shocked to be told that one of their boys had been born with half of his face undeveloped. In seconds, the happy family future they had been planning disintegrated into turmoil and uncertainty.

Laugh out loud funny in places, heart-wrenchingly sad in others, and refreshingly honest at all times, Our Altered Life is Charlene’s wonderful account of how she struggled to forgive herself and bond with a baby she didn’t expect. Follow her transition through grief and anger, challenges and triumphs, loss and acceptance, to love for the life she has now with two children she wouldn’t change for the world.

Buy book or download the Kindle version, here.

Goldenhar Syndrome | Non-Verbal | Austism

Reflections from a Different Journey by Stanley Klein & John Kemp

Reflections from a Different Journey:What Adults with Disabilities Wish All Parents Knew (McGraw-Hill, 2004) is a collection of 40 inspiring short essays by successful adults with different disabilities. Essay authors were asked to write about something they wished their own parents had read or been told while they were growing up.

Buy book or download the Kindle version, here.

Babyface: A Story of Heart and Bones by Jeanne McDermott

The riveting true story of a child, a family, and life on the outskirts of normal.
When Jeanne McDermott’s second child, Nathaniel, was born with Apert syndrome—a condition that results in a towering skull, a sunken face, and fingers webbed so tightly that hands look like mittens—she was completely unprepared for it.

In this extraordinary memoir, McDermott calls on her dual roles as science journalist and mother to share her family’s traumatic yet enriching experience. Though McDermott and her family had to endure Nathaniel’s harrowing surgeries and the stares and comments of strangers and well-meaning friends, they were also transformed by the boy’s amazing strength and exuberant personality. With grace, courage, and humor, McDermott shows readers how a child with a rare syndrome can illuminate “a whole new way of seeing, not simply him and others, but ourselves.”

Buy book, here on Amazon.

Apert Syndrome

Sam: The Boy Behind The Mask by Tom Hallman

Pulitzer Prize winner Hallman tells the life story of Sam, now a teenager, from Portland, Oregon, who was born with a severe facial Hemangioma. All the universal issues about family, fitting in, medical miracles and inner strength are woven into this dramatic real life story. We could not put it down!
Publisher: G.P. Putnam & Sons

Buy the book, here, off of Amazon

Hemangioma

Ugly By Robert Hoge

When Robert Hoge was born, he had a tumor the size of a tennis ball in the middle of his face and short, twisted legs. Surgeons removed the tumor and made him a new nose from one of his toes. Amazingly, he survived—with a face that would never be the same.
This poignant memoir about overcoming bullying and thriving with disabilities shows that what makes us “ugly” also makes us who we are.

Buy the book or download the Kindle/audio version on Amazon.

Facial Tumor