Tag Archive: hydrocephalus

What do Roald Dahl and Annette Perez have in common? They are both authors of children’s book. Yet their connection lies with hydrocephalus. Many of us may not be aware of the fact that famous children’s author, Roald Dahl (of Willie Wonka fame) dealt with hydrocephalus on a very personal level.  His son Theo developed hydrocephalus when he was four months old, after a taxi in New York City hit his baby carriage.  Click on the articles below to learn more about Roald Dahl’s contributions to the awareness and therapy of hydrocephalus.  As a side note, keep in mind that September 13th, is Roald Dahl day across the world.  Take a minute to look over Annette Perez book (and interview) and you will learn a lot about this condition from the perspective of a person who grew up with the challenges of having hydrocephalus.  Both authors, in different ways, have made significant contributions with their books. My Brain Won’t Float Away/ Mi cerebro no va a salir flotando info: www.editorialcampana.com




Hydrocephalus awareness seems to be making some headway. In an article that was posted on Gabrielslife website http://blogs.gabrielslife.org/blog/2008/01/16/hillary-clinton-dicusses-hydrocephalus-in-presidential-campaign

Click on the article to read it at full size.

Presidential nominee, Hillary Clinton talked briefly about hydrocephalus. This was due to the fact that back in 2004, Shannon Mallozzi, mother of Isabella, approached Hillary Clinton. What followed was a conversation where Clinton stated she would pledge her personal support. As well, Clinton suggested that her office would help lobby to fund federal research into the disease. Although nothing has been done yet, the fact that Hillary Clinton took the time to talk to a person- a mother helps illustrate that just like Annie, we need to take control of our lives. Currently, the government does not keep records of individuals diagnosed with hydrocephalus. Yet this disability is real and it affects a lot more people than we might think. Here are some interesting facts about hydrocephalus, http://nhfonline.org/info.php?id=fact

Click on the article to see the whole thing.

Annette Perez’s book gives the reader the ability to connect to a loveable and realistic character. At the same time, Shannon Mallozzi and her daughter, Isabella, emphasize the fact that there are families out there that are dealing with this disability. What’s surprising is the fact that since this disease affects so many people, there should be more resources available and there should definitely be more awareness. Annette Perez’s book is helping; stories such as the Mallozzi’s are also helping (along with this inspirational video clip). http://www.thehillaryiknow.com/ There is so much more that can be done… only time will tell. If Hillary Clinton were to become our next President, would she remember her visit with Mallozzi? Even more importantly, would she act on her pledge to promote hydrocephalus support?

Annette Perez seems to be getting a lot of press lately, so I decided to post an interview with her from Editorial Campana’s website, about her bilingual children’s book My Brain Won’t Float Away/Mi cerebro no va a salir flotando. You can read the interview in it’s original context here or read it in Spanish here.

*In January, Annette’s book was chosen by the first lady of Puerto Rico to be given away as a gift to children at the Fiesta de Reyes, a celebration of Three King’s Day. Full article.

*Annette recently appeared on Despierta America, the largest morning news show in the nation for Spanish-speaking audiences. See the piece on YouTube or see it in one of my earlier posts.

*I just found out My Brain Won’t Float Away is currently in the #22 spot on Amazon.com for best-selling children’s books on disabilities. (And My Brain Won’t Float Away is the ONLY bilingual one on the list.)

*This weekend Annette will be appearing in television news again on Primer Impacto (First Impact).

This is one of my favorite interviews with an author.

Annette MBW cover

1. What inspired you to write My Brain Won’t Float Away?
I don’t think anything specific inspired me. When I started to write the book I was just looking for something to do with writing. I remember thinking of one or two sentences and writing them down, not expecting to do anything specific with what I had written. I have friends like Jacqueline Herranz-Brooks and Sonia Rivera-Valdés who encouraged me to write about my life. The idea of a children’s book began to take shape later.

2. Is it based on a true story? If so, tell us about it.
The story was based on a true story, but we played with many elements to make it fun. The character and story revolve around my own experience as a child growing up with hydrocephalus. I was almost a teenager when I was taught how to tie my shoelaces with one hand. In the book, we made that happened when I was eight. Until then, I had always relied on other people to tie my shoelaces for me.

3. Tell us about growing up with hydrocephalus, and the role that your parents, your school, and doctors/physical therapists played in helping you adjust and live with it.
Growing up with hydrocephalus was not easy. Outside of attending school, I was constantly going to visit doctors at different hospitals. At that time, I remember we visited doctors to find out what caused my disability. It wasn’t until later in my childhood that my mother looked into other facilities that could help me become more independent. The reason I received occupational and physical therapy at a local hospital (clinic) was because at that time (early 80’s) these services were not provided by schools.

My parents raised me in a very loving and nurturing environment. They raised me to be a very independent individual. According to my parents, my disability was not so severe. They knew I was capable of doing things independently, and that I would succeed in life.

4. What was then and what is now the biggest difficulty or difficulties of living with hydrocephalus?
I would have to say that, as a child, the biggest difficulty was having other children—and adults, as well—staring at me as if my condition were contagious or something. It was also hard for me to accept having to exercise to strengthen my weak hand. As an independent person, it has always been very difficult for me to do things that others tell me to do, especially when I am told to do something I do not like or want to do.

5. You are a college graduate and are studying to receive a Master’s degree. Is it hard for you to achieve these goals?
No, not really. I believe that the reason I graduated from college and am working towards obtaining a Master’s Degree has to do with my emotional growth. As I grew older, I realized how important it is to have an education. Having a disability was not going to stop me from furthering my education, or from doing anything else.

6. You seem to be an achiever. What motivates you?
As a “disabled” person, I have a need to accomplish as much as I can throughout my life. I guess you can say it’s the disability itself that gives me the motivation to achieve and succeed in any goals I may have.

7. Tell us a little about your parents.
My parents are both of Puerto Rican origin. They lived in New York City ever since they got married in the 1960’s. Out of the four children they had, I was the only one who was diagnosed with a disability. However, my parents raised me the same way that they did my siblings. Although my parents knew about the difficulties they had to face in certain situations, they never once doubted my capabilities. If anything, they refused to allow my so-called disability stop me from living like an independent individual. My parents were not going to allow my minor physical deformity stop me from living like any other “normal” child.

8. Why did you write the book?
As I would go to different bookstores and look through the children’s section for books on children with special needs, I noticed two things. One was that the section for books on children with special needs was very small. There would be at the most just one shelf of books. My second reason for writing the book is that I also noticed that out of the small selection of books about special needs, there were no books written about hydrocephalus.

9. What do you wish to achieve with My Brain Won’t Float Away?
With this book, I hope to raise some awareness in people, both adults and children. I want people to understand that just because some of us are different in certain ways it does not mean that as disabled people we don’t have feelings. Furthermore, by writing this book, I want to hopefully give some hope and awareness to those individuals who are living and dealing with a similar situation. One can accomplish many things even if having a disability is a part of your life. I hope this book shows people that a disability should not control their life. The individual controls his or her own life!

10. Can you explain to us where the title came from, and what it means?
The title came from the question that Annie (the main character in the book) asks her mother in the story “Is my brain going to float away?” It is based on the “common” definition of hydrocephalus, and is one of the contributions that Mario, my editor, made to the book. I told him the story about the time I actually asked my mother that same question, and he thought that it would make a great title for the book. You have to read the story to understand the meaning.

11. Why is it bilingual?
Campanita Books is committed to publishing books in English and Spanish, so as to make the book accessible to as many people as possible. I wrote the text in English, and Jacqueline Herranz-Brooks, translated it. I am bilingual, so wanting to do the book in English and Spanish made sense, and I am very happy that kids in Puerto Rico, the Dominican Republic, and the rest of Latin America will be able to read it, as well as children who read English.

12. How did you work with your editor?
My editor and I were in constant contact via e-mail. I can honestly say I stopped counting the e-mails, there were so many. We also spoke on the phone and got together in person whenever possible. He was instrumental in giving the book the shape it has, he found the core to my story and made it revolve around the one-handed shoe tying incident. He picked up little things in my conversations with him and would add them to the story, like the chocolate ice cream, the hand shaking with my therapists, and other little details. He helped me turn my idea into a book, and made many contributions to the final manuscript. We get along quite well, except that I am sure I drove him crazy with my questions and my wanting to know when the book was coming out. I had no idea how much work was involved in writing, editing, illustrating, and publishing a book.

13. How did you work with illustrator Yolanda Fundora?
I worked with Yolanda mostly through Mario, my editor. However, Yolanda and I would get together and speak via email, time permitting. She used actual photographs of me as a child, and also did some sketches of me for the illustrations. I also gave her a picture of my mother for the book. She worked with Mario and they would send me samples once in a while, but from the time I saw the first sketches I had no doubt that the book was going to be beautiful and that she was capturing the spirit of my text. I did not see the completed book until Yolanda was basically finished with the illustrations. I was happily surprised to see myself as a “character.”

14. Do you have plans for more books?
Eventually I would like to publish another book. However, for now I am extremely happy to have completed this one.