These books reviewed by families dealing with periodic fever syndromes, aka autoinflammatory diseases, come highly recommended to share with your child. We’ve included books that will help kids who themselves are living with a chronic illness, or who have a sibling or parent who is chronically sick. These stories and journal will help kids and their families understand and become more comfortable with all the medical appointments, start conversations, and feel less alone in their struggles.
Digging Deep, A Journal for Young People Facing Health Challenges
Reviewed by Jennifer Tousseau
This journal, written by Rose Offner and Sheri Brisson, is absolutely the best I have ever seen for a child living with an illness of any kind. Each page has a prompt for kids to answer with writing, words, drawings, photos, or however they want. They can make it their own. The art draws you in and perfectly reflect each page’s prompt. And the prompts creatively and with sensitivity and sincerity touch on all the emotions and challenges that kids with health challenges face, from spending a lot of time with doctors to how relationships with family and friends may change. With topics such as Pieces of Myself, Heart Songs, and My Boiling Point, they get to explore how they felt when they were diagnosed, fears, hopes, new friends, and future dreams. The journal also opens up communication with family about topics you may not have even realized your child was thinking about. Although this book is to help work through the life changes and challenges of an illness, it also helps remind kids that there is more to them than their illness with pages dedicated to what makes them unique and special.
In short, I think every child, whether young or teen, facing a health challenge could benefit from this book. You can buy it here on Amazon.
Reviewed by Jennifer Tousseau and Katie Baily
Wonder, written by R. J. Palacio, is a must read for the entire family. Told with humor (everyone will laugh) and respect, Wonder follows Auggie, his family, and friends through 5th grade, Auggis’s first year going to school after being homeschooled due to his medical condition. Readers aren’t told exactly what Auggie has until midway through the story, because the story is not about the diagnosis; the story is about living life with the diagnosis. (Although the Genetics 101 chapter will feel familiar and poignant to those with a genetic condition.)
Of course that doesn’t mean life is easy for any of them and the reader experiences that from the personal perspective of Auggie and each person close to Auggie, which sets this book apart. Hardly any of us can relate to being Auggie, though we want to better understand. But all of us can relate to the humanity and imperfections of the other characters, and how those characters can also show resilience, humility, and integrity. His friend Jack Will’s story is impactful because that’s how many kids with even the best hearts would be. His friend Summer is more of that “one of a kind” friend we all hope to have in our lives.
It’s hard to give a good review of this book without giving everything away, so we’ll just say it has it all: good friends and family, life’s high points and low points, and lots of laughter, cheers, and some tears.
To give you a peek into Wonder here are a couple of our favorite quotes from the book (It was hard to narrow this down to just two!):
From the sister who struggles with watching her brother struggle and yet feels their parents put her second behind her brother’s needs. She’s also one of Auggie’s biggest supporters. –
I’ve seen August after his surgeries: his little face bandaged up and swollen, his tiny body full of IVs and tubes to keep him alive. After you’ve seen someone else going through that, it feels kind of crazy to complain over not getting the toy you had asked for, or your mom missing a school play. I knew this even when I was six years old.
From Auggie’s homework assignment –
This precept means that we should be remembered for the things we do….The things we do outlast our mortality….are like monuments that people build to honor heroes after they’ve died. They’re like the pyramids that the Egyptians built to honor the pharaohs. Only instead of being made out of stone, they’re made out of memories people have of you. That’s why your deeds are like your monuments. Built with memories instead of stone.
When reading Wonder we both thought for sure the author had personal experience dealing with chronic medical condition. She got so many things right; the fears and uncertainty that parents face making what to others would be mundane decisions, the child living life with their medical condition in tow, the sibling struggles, and even dealing with outsiders looking in who don’t care to try and understand. But it turns out, R.J. Palacio developed this story after meeting a child with facial deformity and regretting how she reacted. That night after her encounter she started writing Wonder. –
For the rest of the day, I couldn’t stop thinking about how that scene had played out…What could I be teaching my children so they could understand how to respond better next time? Is “don’t stare” even the right thing to teach, or is there something deeper? All this stuff was flying through my head, and I realized that I was disappointed in myself because I had missed a good teaching moment for my kids. What I should have done, instead of trying to get my kids away and avoid the situation, was engage the girl and her mother in conversation. If my son cried, so be it: kids cry. But I should have set a better example for him…Instead I panicked. I simply didn’t have the wherewithall to know what to do in that situation. – R. J. Palacio
R.J. Palacio has turned her moment of regret into a positive story full of simple kindness, a teachable moment for us all, and sparked the Choose Kind Campaign which you can learn more about here.
It can’t be said enough that this book is well worth the read. Read it with your kids and keep the tissue box close by. You can buy Wonder here on Amazon.
A Day with the Animal Doctors
Reviewed by S.T.
My son, age 3, loves reading A Day with the Animal Doctors written by Sharon Rentta, a sweet book about a little boy named Terrence who joins his mom, a doctor, for a day at the hospital. Through Terrence’s antics, readers learn about different reasons people come to the hospital and some of the equipment doctors use, such as X-rays, etc. The pictures are cute and funny, with small details to engage older readers, such as the endless work of the cleaning mice, who constantly tidy up after Terrence and sweep up a leopard’s spots, or an elderly crocodile who loses his false teeth and must have “nil by mouth”. Overall, the book normalizes hospitals and doctors, making them seem friendlier and more welcoming.
Taking Arthritis to School
Reviewed by Katie Bailey
Taking Arthritis to School, written by Dee Dee L. Miller and illustrated by Tom Dineen, is a wonderfully illustrated, informative, and child-centered book about pediatric arthritis. The story outlines several experiences that many families who are affected by autoimmune or systemic autoinflammatory diseases will find familiar. The author manages to balance a sense of optimism while still explaining some of the challenges these children face in simple terms. The reader is frequently reminded that although there are difficulties including labs, procedures, medications, and days where Eric is not feeling well, he is still an ordinary kid who loves exercising his imagination, going to school, and playing with friends.
Reviewed by Katie Bailey
Sometimes, by Rebecca Elliott, is a book written especially for siblings of children with chronic illnesses. The story follows a brother and sister through the sister’s hospital visit, which you can tell is likely a recurring event. The author does a beautiful job of highlighting the special relationship between the sibling pair. The brother’s love for his sister is evident throughout the story, and parents might also get an idea or two on how to incorporate the healthy siblings during difficult times such as hospital stays. The author leaves several details open to interpretation, so families dealing with various chronic illnesses can use it to touch on their own children’s experiences. This is a quick and meaningful read for any family that has toddler through elementary age siblings.
Why Does Mommy Hurt?
Reviewed by Katie Bailey
Why Does Mommy Hurt?, by Elizabeth M. Christy, is an insightful and honest portrayal of life with a chronically ill parent told from the perspective of her young son. The reader gains understanding of how the mom’s illness impacts both her and her family’s daily life, yet the young son is quick to point out her inherent irreplaceable value as his mom and all the important and special things they still enjoy doing together. The boy expresses authentic feelings, but is also full of patience and a desire to help his mom feel better in this sweet, simple story. This book is a great book for any chronically ill parent to read with their young children.
Reviewed by Katie Bailey
Little Tree, by Joyce C. Mills, is an empowering tale of a tree who is forever changed after weathering a dangerous storm. The book is colorfully illustrated and its wording is simple enough for young children to relate to. However, the pages are filled throughout the story with deeper meaning from which older kids and adults may appreciate even more fully. It follows Little Tree’s journey, highlighting many common struggles and emotions felt by those who suffer from chronic illness. Acceptance is not immediate, but with the help of a loyal friend and two kind caretakers, Little Tree reminds the reader that having “strong roots and a brave heart” is even more powerful than she imagined.
The Fantastic Interleukins
Part of becoming accepting and comfortable with all that comes with an autoinflammatory illness is learning about your illness. It’s good for even young kids to learn what they can so they are able to participate in conversations with the doctor and just understand what is happening inside their body. The Fantastic Interleukins, written by an immunologist, gives an explanation to what each cytokine’s role is in the body. You can download it free here, or buy a paperback book or Kindle version here on Amazon.