Dancing in the Storm

by Amie Darnell Specht, Shannon Hitchcock

Inspired by the co-author’s own life, this is the story of a girl learning to live fully with a rare genetic disorder.

Kate’s life in Baton Rouge, full of friends and family, gymnastics and Girl Scouts, is just plain great. But then, at the age of twelve, she suddenly develops a mysterious shoulder pain that won’t go away . . . and that will change her life forever. It turns out that Kate has one of the rarest genetic disorders in the world, Fibrodysplasia Ossificans Progressiva. FOP causes bone to form in places in the body where it shouldn’t, and there’s no cure yet. Kate will need to learn how to live with this difficult new reality, helped by those close to her and by a new pen pal named Amie, who has been living with FOP for years.

Genres: Middle Grade, Disability, Childrens, Realistic Fiction, Sports, Fiction, Audiobook

224 pages, Hardcover

First published February 6, 2024

Reviews

[Bookishrealm · Rating 4 out of 5]

For the past few years, I've tried to increase the amount of books that I read that include disability representation. Dancing in the Storm caught my attention due to it's focus on gymnastics and the main characters experience with FOP (fibrodysplasia ossificans progressiva) which is a rare musculoskeletal condition. Those with this genetic disorder develop bone in areas of the body where it is not normally present including places like ligaments, tendons, and skeletal muscles. The book follows main character Kate who is a competitive gymnast until she begins to develop shoulder pain that won't disappear. As a result of her diagnosis, Kate is discouraged from doing any physical sports. What follows is a emotional journey in not only understanding FOP and how it will impact her life, but also the difficulties is causes in friendships and familial relationships. Because Shannon Hitchcock wrote this in collaboration with Amie Darnell Specht who has FOP, the development of Kate as a character and the emotional and physical changes she experiences at the onset of the novel feel authentic. Although she struggles in the beginning, it was refreshing to see Kate develop a support system. There are various moments where she struggles with family and friends; however, there were always characters in background that showed up during her greatest times of need. This was an eye-opening and engaging read that ultimately encouraged me to seek out more information about those who have this rare genetic disorder and the research being conducted to help find a cure.

[Stephanie Fitzgerald · Rating 4 out of 5]

*You will tear up and also cheer while reading this one!*
Twelve-year-old Kate feels very lucky! She’s doing well in school, she’s got a supportive, loving family, and she’s enjoying being a Girl Scout and a gymnast. Kate attributes her recent shoulder pain to working out, and doesn’t take it too seriously, until she is forced to…
A diagnosis of a rare disease that causes bone to form in places in the body where it shouldn’t threatens to turn Kate’s whole world upside down. How will she be able to adjust to this “new normal”, when everything and everyone seems to be changing around her?
The co-author has been living with Fibrodysplasia Ossificans Progressiva, or FOP, from childhood. Fellow novelist Shannon Hitchcock drew upon many of Amie Specht’s own experiences for this book.
Wonderful book for middle-graders, or for anyone who needs a dose of inspiration.

[Julia✨Book Reviews by Jules✨ · Rating 5 out of 5]

Thank you to NetGalley and the publisher for providing me with this book for free in exchange for my review! All opinions are my own.

As someone who lives with multiple disabilities and health conditions, this book was amazing for me to read. When I was a young child growing up in the 2000s, there wasn't a ton of books about children who were different. I am glad that peoples attitudes have (slightly) changed and there are books being produced today about children who are not neurotypical. This is a very important lesson that children need to learn. Some children will have certain health conditions or disabilities that will make them different from the average child, but that doesn't mean that the child is less than a neurotypical child. This book should be read to children by parents, teachers and librarians all across the world. This is one of the most important books a 21st century child can be exposed to and I highly recommend it. While I wish there was more books like this when I was growing up, I am still glad to see books like this being published today. They belong in this world. Just like I do.
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[Steph L · Rating 5 out of 5]

Such an important and fun MG Novel.

Characters-10

I loved the characters in this book. Kate was an amazing MC, and I loved her personality. I loved the supporting characters in this book, like Kate's friend Mindy, because she was there for Kate. The people in this book went through some challenges, and they rose above them, and came out better on the other side.

Atmosphere-10

I loved the atmosphere in this book. I thought the Baton Rouge setting was explored well. We saw a lot a lot of different areas in this book, and I loved exploring all of it.

Writing-10

I think this book work well because its own voices. I loved the writing style in this novel. I felt it was educational for both kids and adults.

Plot-10

I loved this story! There were ups and downs in the novel, and I enjoyed the ride with the characters in this novel. Dancing in the Storm was a mix of education, that at times read like non-fiction, and an enjoy story with other moments for Kate and her friends.

Intrigue-9

I was interested in this story. I wanted to see where the story was going to go.

Logic-9

I loved how the explanations were in this novel, and you could see where the characters were coming from.

Enojyment-9

I enjoyed this more than I thought I would. I loved the characters and the engaging story.

[Shannon · Rating 5 out of 5]

A reallly great look at being diagnosed with a rare genetic disorder - Fibrodysplasia Ossificans Progressiva (FOP) at a young age and having your whole life get turned upside down.

This #ownvoices middle grade novel has fantastic disability rep and explores so many relatable aspects of coming to terms with living with a condition that affects mobility and can get progressively worse as well as the ways it affects other family members too.

I really enjoyed that the MC connects with an older mentor with the same condition who gives her useful advice and directs her to other support groups/conferences. I hadn't heard of this rare genetic condition before and it's great to see a book that talks about it in an understandable way for young readers. Many thanks to @prhaudio for a complimentary ALC in exchange for my honest review!

[Meg Eden · Rating 5 out of 5]

I really enjoyed the rep in this one and the message behind the book. It may seem like a story centers on such a specific disability experience but, like all good stories, it speaks to the human experience at large, and in this case, principles in the reality of being disabled and how to cope. I loved the challenge to have a positive attitude, to be creative, and "keep [the] mind flexible" despite extraordinary circumstances. I particularly felt compelled by Mom's quote "sometimes the bravest people are the ones who just say no." I have been humbled and challenged by the reality of having to say no when my body won't keep up. It's so hard, but so important--and there shouldn't be any shame in it.

I had so many favorite quotes but a few of them are:

"My body is inflexible, but I keep my mind flexible"

"You have no control over the thing you're most afraid of...so, if you accept that and stay in the present, you'll spend less time being afraid."

"You're trying to control something you never had control of in the first place...accept it, and let the fear go."

"It wasn't that I was braver than other kids. I just hadn't been given much choice--it was either find a way to be happy or stay miserable."

I thought at times the book was a little too didactic, especially in how Mindy keeps talking about her poverty. I love that the book addresses issues of disparity not just with disability but race and socioeconomic status, but I wondered if someone like Mindy would really keep bringing this up of her own volition, and if there was a more organic, compelling way to integrate these themes. Would've loved to see these disparities organically intersect, like poverty and disability or race and disability.

All that said, I flew through this book and highly recommend it for disabled and able-bodied readers alike.

[Ms. B · Rating 3 out of 5]

Much like Maddie in Mustaches for Maddie, Kate keeps an upbeat and positive attitude when given the news that she has Fibrodysplasia Ossificans Progressiva, a rare genetic disorder that prematurely ends her gymnastics career. If you like stories about facing life's challenges with space and grace or if you like stories with characters (especially young people) who deal with medical prognoses, give this is a try.

[Eliott · Rating 3 out of 5]

Thank you to Rocky Pond Books for letting me read an ARC of this book through NetGalley!

Dancing in the Storm
Overall Rating: ⭐ ⭐ ⭐ (3/5) or 6.57/10 overall

Characters - 6
The characters is this book didn't particularly stand out to me. While they were certainly likeable, I didn't feel very engrossed in their lives. They felt rather reactionary, rather than actionary, which would be fine, but with the story's message of taking action and ownership over what you can do, instead of dwelling on the things you cannot, it didn't sit well with me when the characters didn't always embody that mindset.

Atmosphere - 7
The atmosphere was decent, but I would have liked a bit more description. I couldn't always focus on what was happening because I didn't know WHY it was happening. Some of the events were surprises though, so it made sense that the reader and the characters might not know why the events were occurring.

Writing - 7
I enjoyed the writing style of this book. The short chapters definitely helped keep me invested in the story and provided plenty of opportunities for breaks.

Plot - 6
The plot was interesting but very fast-paced. Things seemed to happen faster than need be and some plot-points weren't as explored as I would have liked.

Intrigue - 7
I was intrigued from the description of this book. I'd never heard of FOP before, so I thought this book could help me learn more about it through a fun and engaging story. I certainly learned more about FOP from this book and I'm glad that I gained that knowledge. The book was intriguing for most of the time, but there were some points that I wish could have been explored more in depth.

Logic - 7
The book was reasonably logical. Most of the characters' actions made sense and I could follow the events that were happening.

Enjoyment - 6
Overall, the book felt like it was trying to do too much. There were a few too many moving parts that never were wrapped up or thoroughly explained. That said, I could tell that the authors had a personal connection to the topic and I'm glad I got to learn about FOP. :)

[Rebecca Lowe · Rating 3 out of 5]

Middle school appropriate. The book keeps an upbeat positive attitude even while discussing the fear and anger and grief that the main character feels at getting a diagnoses for a serious and life-altering medical condition. Some important lessons for allies about treating people like normal.

[Rachel Kaye · Rating 5 out of 5]

I feel like this should be required reading for all kiddos! Loved everything about this so much everyone should read it

[Jan Talkington · Rating 4 out of 5]

This is a middle school book written by an author I know. Amie attended the same elementary school as our kids, which is when I first learned of FOP. Her and her family all have a great attitude and Amie has never let FOP define her. This is a well written book that should help middle age kids understand things that some kids go through with their health and emotions. I plan on holding on to it for when our granddaughters are a little older.

[Ms. Yingling · Rating 3 out of 5]

E ARC provided by Edelweiss Plus

Kate is an avid gymnast, and her family supports her endeavors. Her grandparents even come from West Virginia to Louisiana to visit when she has a big meet, where she does very well. Her shoulder has been bothering her, but that's not unusual in the sport, so she doesn't tell her mother. She has two good friend, Claire, with whom she does gymnastics, and Mindy\ who is much more fun and does things that are not related to gymnastics, like baking or just hanging out. Kate is missing her dog, who passed away a bit ago, but continues on with her training and competition. When the pain becomes too much, she tells her mother, who discoverers a large bump on her shoulder. An appointment is made with the doctor right away, but he reviews Kate to an orthopedic specialist, who refers them to a geneticist. The root of Kate's problem is a genetic disorder called Fibrodysplasia Ossificans Progressiva (FOP), a rare condition where trauma causes tissue to turn to bone. Any kind of sport is discouraged, as well as any kind of activity that could lead to injury, and even things like shots or surgery that could traumatize muscles. Gymnastics are definitely out of the question. It takes some courage to tell people in her life, including her grandparents, her teachers, and her friends, and Kate is sad to give up gymnastics, although her parents decide to put in a pool to encourage physical activity. While Mindy is supportive, Claire and her friends from gymnastics just try to ignore this news. Kate's mother takes her to look at rescue dogs, and she adopts a new pet whose owner has passed away. When Kate is assigned a speech for class about something that she is passionate about, will she be able to adjust to her new reality and find some way to express how she is going to go on?
Strengths: I had never heard of FOP, and it certainly is a life changing event for Kate. I love that Kate referenced Judith Heumann, who passed away recently. This is a realistic view of one girl's struggles with a rare and potentially debilitating disorder that changes the activities she loves and her relationships with her friends.
Weaknesses: This got off to a rocky start for me, and seemed different from Hitchcock's usual writing. It's interesting to see this collaboration though; Hitchcock has done a number of these.
What I really think: This is a good choice for readers who want to are interested in the challenges of using a wheelchair in Stroker's in A Chance to Fly (the author is mentioned in the book), the discussion of Cystic Fibrosis in Baldwin's No Matter the Distance, or the issue of declinging eyesight in Johnson's Dog Driven.

[Mary · Rating 4 out of 5]

Kate Lovejoy seems to have it all: a loving family, a talent for gymnastics, and the means to live a comfortable life. But one day, her shoulder begins to hurt after a particularly grueling gymnastics practice, and the pain does not go away. Instead, a lump appears on Kate’s shoulder, causing excruciating pain and preventing her from moving her arm to its fullest extent. The diagnosis that finds her is the rare genetic disorder of Fibrodysplasia Ossificans Progressiva, or FOP, and it is up to Kate to decide whether her new identity will define her, or if she will find a way to rise above it.

This middle grade story incorporates many of the familiar experiences found in middle school: friends, frenemies, crushes, challenging coursework, and extracurricular activities. It also manages to address differences in income, family dynamics, and race in constructive and approachable ways. Though the focus is on a white family that is financially sound, Kate’s peers come from a variety of diverse backgrounds, and Kate often inadvertently makes mistakes she must learn from. This growth mindset ultimately helps Kate come to terms with her own diagnosis while finding space to forgive others who begin treating her differently.

The subject matter in this book is weighty for young readers, especially because a diagnosis of FOP is one that does not often have a positive outcome for patients. However, youth are not immune from the challenges that life can bring, and this book does a good job of capturing the feelings Kate and her companions have about a terrible disease that is hard to understand. Each chapter is short and the book moves quickly, especially as readers are curious to discover exactly what happens to Kate and how she will manage her unprecedented situation. Written from the author’s own experience, this book is one that authentically introduces readers to FOP while providing opportunities for further learning. This is an engaging addition to library collections for middle grade readers.

[Rosi Hollinbeck · Rating 5 out of 5]

Kate is a gymnast, and gymnastics is absolutely central to her life. She eats and breathes it. After a great match where she wins a gold medal, her shoulder is sore, really sore. But she tries to keep on keepin’ on and ignores it — until she can’t. She finally tells her mom, and off they go to the doctor and then another doctor and another. The news is not good. Kate is diagnosed with Fibrodysplasia Ossificans Progressiva (FOP). It is every bit as scary as it sounds. It is an extremely rare disease caused by a genetic mutation, and everything changes for Kate. She can no longer participate in gymnastics. She can’t even go to Girl Scout meetings because the scout leader is afraid of the liability of having her in her house. It is no longer comfortable to eat lunch with her friends since they are all on the gymnastics team, and it seems that’s all they talk about. But her best friend, Mindy, who goes to a different school, is a steadfast friend. Kate educates herself about FOP, and although her research raises a lot of fear and questions, she also finds helpful information and a great friend through an online FOP group.

Shannon Hitchcock and Amie Darnell Specht have written a truly important book that shines a light on the issues those with disabilities face every day in so many ways. It also looks hard at themes of family, friendship, and perseverance. The courage it takes for a person with disabilities to just go out their front door into the world is something most of us seldom consider. Amie’s story told through Kate will open readers’ eyes to what happens in the lives of the disabled and how the rest of us can make things safer and easier for them as they face a difficult existence. Shannon is a great storyteller and her skills make this a very compelling read. The writing is beautiful, the characters are perfectly imperfect and realistic, and the story is a real page-turner. This deserves a wide readership well beyond the middle-grade audience. I wrote this review for my blog. You can see more reviews at https://rosihollinbeck.com/blog

[Katie · Rating 5 out of 5]

Kate loves her friends, family, gymnastic and girl guides. But when a mysterious growth develops on her shoulder, and she is diagnosed with FOP, a rare disease, she is forced to adjust and cope with a new reality.

I think this is a wonderful book for pre-teens to learn about and empathise both with people with FOP, as well as other rare diseases and disabilities. It doesn’t shy away from the realities and real impacts of the disease, but provides insightful narration into adjusting to and coping with this condition. The story did a great job or exploring the challenges of someone with a rare disease, such as isolation from peers, navigating diagnosis, finding allies and others with lived experience, the impact on family and friends, finding new abilities and interests, and the coping with flare ups and deterioration.

The book also explored the concept of privilege and disadvantage in different forms, and sheds light on the state of disability rights. It was really interesting to read the authors note at the end to see how this book came to be, and the real life experiences that inspired it.

Thank you Penguin Young Readers Group, and NetGalley for a complimentary copy of this book. Opinions expressed are my own.

[Michelle Kidwell · Rating 5 out of 5]

Dancing in the Storm
by Amie Darnell Specht; Shannon Hitchcock
Pub DateFeb 06 2024
PENGUIN GROUP Penguin Young Readers Group
Rocky Pond Books
Children's Fiction| Children's Nonfiction| Middle Grade


The Penguin Young Readers Group has provided me with a copy of Dancing in the Storm for review
Rocky Pond Books and Netgalley:



The book Dancing in the Storm is one I wish I had had in middle school!


The life Kate leads in Baton Rouge is full of friends, family, gymnastics, and Girl Scouts. Suddenly, at the age of twelve, she develops a mysterious shoulder pain that won't go away. Kate has one of the world's rarest genetic disorders, Fibrodysplasia Ossificans Progressiva. In FOP, the body forms bone in places where it shouldn't, and there is no cure. Kate. It will take Kate some time to adjust to this difficult new reality, but she will have a pen pal named Amie who has been living with FOP for years who can help.


Based on Amie Specht's own experiences with FOP, she and Shannon Hitchcock have written an uplifting story of overcoming adversity with courage and joy.


I give Dancing in the Storm five out of five stars!

Happy Reading!

[Anna · Rating 3 out of 5]

Dancing in the Storm: three stars. I think this is the first middle grade book I know of about FOP! It dives into Kate's feelings surrounding her diagnosis, though often favors preachy lessons about positive thinking over concretely addressing the challenges of living with FOP. As a reader with a disability, I sometimes felt uncomfortably like I wasn't the intended audience--I'd be interested to hear what readers who share Kate's condition think.

The writing quality is also distinctly lower than I've come to expect from Hitchcock--a lot of telling rather than showing, and rushed-yet-predictable pacing.

Kate's interactions with an in-universe version of co-author Specht reminded me of Bunker's and Shappley's Joy, to the World. As in that book, I found it an awkward gimmick here.

There's a Harry Potter reference.

Would I recommend this book, though? I suppose so. It's not the best-written, but the fact that it raises awareness for a lesser-known medical condition makes it valuable, and if it helps non-disabled kids empathize with their disabled peers, well, that would be good.

[Jayme · Rating 4 out of 5]

This is an interesting and thought-provoking middle grade novel about Kate, who is diagnosed with a rare genetic disorder, FOP. This is a disorder that is not well-known as it is so rare, so I appreciated learning more about it through Kate's story. I think this book is a great read for middle schoolers to help them better understand the challenges associated with disabilities of all kinds, and help them develop empathy and compassion for others unlike themselves. The book is also hopeful and inspiring as Kate learns to live day-by-day and use coping mechanisms to deal with both the physical and mental challenges she faces. Thank you to NetGalley for providing this ARC.

[Lexi (Reads and Riesling) · Rating 5 out of 5]

I received an ARC from the publisher via NetGalley in exchange for an honest review.

I really enjoyed this book. I did feel that it ended somewhat abruptly, but overall, this was a really beautiful book. It was emotional but also funny and educational. I didn’t realize this book was somewhat based on the co-author’s life with FOP until the author’s note, but I loved that it was such a personal story to her and I think you could really see that in the story. I think this would be a great book for middle grade readers to learn not just about FOP and rare diseases, but disabilities in general and how they affect people living with them.

[Marcie Saldivar · Rating 4 out of 5]

This is the story of Kate, a young gymnast and girl scout who finds out she has a rare condition called FOP. She has to be very careful because trauma can cause flare ups in which bones grow in abnormal places. This means no more gymnastics and limits other activities as well. Kate finds a way to cope with help from her family, friends and an adult she meets online that has the same condition. Great middle grade book showing the good and bad things Kate goes through as she learns about her condition and teaches others about dealing with people with disabilities. Thank you to NetGalley and the publisher for this ARC.

[Joanie Whittemore · Rating 5 out of 5]

Not sure I can express just how much I like this book! When I was 14, I was diagnosed with degenerative diseases and was told I had to stop dancing. I didn’t quit and by some miracle fought through the pain and slowly progressing disability (though I did have to give up dancing altogether eventually). This book would have brought me so much hope during that period of my life, and I truly hope it gives hope to others who experience lifelong progressive illnesses.

My favorite lesson from the book is that we should all “focus on what we CAN do!”

[sab · Rating 4 out of 5]

My ten year old read this book, said it was good, and asked me to read it and talk with her about it. What an honor—and woah, I learned a lot. I had never heard of FOP before and was touched by how the authors relayed the story with compassion and fact. (Though this is certainly easier to read for an adult than a fourth grader, I need to credit being on vacation for my ability to finish it in a day!)

[Sarah · Rating 4 out of 5]

I was enticed by the comparisons to Out of My Mind, and while I don't think this will make the classics list like that one, this was a good read that I immediately gave my tween daughter (who happens to be a gymnast). I enjoyed the author note at the end and through reading, I learned a lot about a rare genetic disease that I'd never heard of.

[Rita (RitaReadsTrash) · Rating 4 out of 5]

I think this is such an emotional and age appropriate read. Disability rep is so important for kids, and this is a great introduction to a rare and debilitating genetic condition, FOP. I think the author did a great job not only highlighting Bean's struggles with her diagnosis, but her friends adjusting their friendships to meet her where she's at.

[Adelle · Rating 5 out of 5]

This book was really good! I really enjoyed learning about the medical condition that the main character suffers from, it was really interesting, and I loved seeing how she learned to cope with the condition. It was so fun to see her relationship with her online mentor grow!

[Ms. Nigeria Nigeria Parker · Rating 5 out of 5]

This book was very informative especially to be a fiction book. I’ve never heard of FOP, but this book taught me to do research on it. Just in case I start back being an IEP teacher or just around a child that will need my help.

[Peggy · Rating 5 out of 5]

A very touching, well written story. I highly recommend Dancing In the Storm.

[Pat · Rating 5 out of 5]

This story is inspirational and awareness raising. It is really important for kids to read books like this to develop their compassion for everyone.

[Susan · Rating 5 out of 5]

Good story about a young girl with a rare disorder.

[Luzenskets · Rating 5 out of 5]

Authentic voice of a person with FOP. Appealing to grades 4 - 7.