Hemophilia Books

Having been fortunate enough to personally know Henry Nichols and his family I feel that his father, Hank, did a wonderful job of portraying the love and support that was a part of their everyday lives in the face of the tremendous hardships that were a part of Henry's life. Henry was a brave,interesting and fun young man who showed the world that we can overcome great fears and live our lives to the utmost from climbing mountains to enjoying good food. He attended our daughter's birthday party just days before his accident and we still remember how he stationed himself at the fondue table and had the best time partaking of everything from cheese to chocolate and wanting the recipes !

Henry's life and his family's undaunting spirit would surely be an inspiration to anyone who reads this book.

I find it to be an exceptional, moving, revealing story about Henry, his family, and the extreme challenges of dealing with a relentless disease.
From his childhood antics to his humor and his courage, Henry comes across as a wonderful and exceptional human being.
He knew who he was and what he wanted to contribute in spite of the raw deal handed to him. He took the unlikely and risky path of revealing his story about AIDS. The Boy Scout turned Eagle Scout chose to become an AIDS activist, first on home ground and, ultimately, across the world. His story is a tear-jerker. But it also is a testament to how exceptional people deal with exceptional challenges.
An uplifting message at the end helps bring Henry's story full circle. The message provides much-welcomed balance and perspective to an emotional, tragic, heart-wrenching story of a life lived well in spite of it all.

This book leaves a wonderful legacy for Henry Nicols and the entire Nicols family. For those of us who knew Henry and his family, the book does a wonderful job of recalling the love, courage and strength this family obtained from each other and gave to the rest of the world. For those who might not have been privileged to know Henry or the family, the legacy story inspires everyone to make a difference and to change the world in which we live. In my opinion, Henry Nicols embodied great characteristics that would make a wonderful President of our great country and we need that type of leadership now and into our future. I would recommend this book to everyone and will purchase copies to give to my family and friends. Everyone should read this book. Thanks you Hank for writing this story.

It is seldom that I am able to immerse myself in a book for more than an hour at a time. However, last night I laid on the sofa and began to read "Henry for President" and at 12:30 a.m. I had completed it. What a mesmerizing, gut-wrenching and inspirational account of not only Henry's remarkable life but of the amazing strength, love and courage of his entire family. I simply could not put it down! How this family made it through so many years of anguish is incomprehensible but the bond of this family made me long for a more personal relationship with my own children. Each chapter had me thinking I could be a better father and had me wondering how to make up for lost time with them. It also made me realize just how fortunate I am to have four healthy offspring.

Thank you Mr. Nichols, for writing Henry's story and sharing it with the world. I know it will change lives as it has mine.

A Moving Memoir--a must read, June 29, 2008
By Dr. Susan Baum (Storrs, CT USA) - See all my reviews


This is a father's touching tale about living with a child suffering from a fatal disease. At 10 years old, Henry contracted AIDS as the result of the many transfusions he received in response to his having hemophilia. At that time no one would associate with someone who was afflicted with HIV. Nicols weaves a poignant story of how his family bonded together to make Henry's short life meaningful and worthwhile. Henry for President is a tear jerker you won't want to put down. Readers will be inspired by the love and compassion of a special family who helped Henry convince the world that AIDS should not be feared and that understanding would provide hope for AIDS patients everywhere.

Like Mr. Andrews, I have a bleeding disorder. We also share the sad distinction of having to be hospitalized for "bleeds". These are always terrible, trying times.
My god how I wished I'd had this book with me during my last bleed.
Andrews captures the experience perfectly. There is all the fear, the humor, the midnight pleas for more pain medicine, the frustration, the urge to get up and get back to your normal life. It's all there. And without a word wasted.
The loss of Tom Andrews was a tragic moment for poetry, but I will continue to honor his memory by buying as many copies as I can of Codeine Diary (as well as his wonderful poetry collections) and handing them out to everyone I know (especially my patients with bleeding disorders). I know that the world has much to gain from his wise words.

This novel is at times funny, at other times heartbreaking, but entirely wonderful. It is a shame that Tom Andrews passed away so soon after the publication of this, his first novel. He was a great writer and a family friend who will be missed.

As I read this I entered a world where only 20,000 others are forced to endure in the USA. That world being that of a Hemophiliac. We can never know what suffering is as Mr. Andrews does, but this book has shown us a shocking glimpse of what it's like. I have been awakened from my shallow existence and can now overcome what measly barriers life has given me. Mr. Andrews, thank you for sharing your life with us. I sir take my hat off to you for your courage and wish you nothing but the best of luck in the future! I must also conclude by saying that you are a damn good poet as well, but then again Charles Wright is your mentor. But please do me a favor from now on, try to live a sedentary life for you have much poetry left to write. It would be a shame to deny us of many more years of your wonderful poetry, by risking it all on some reckless adventure. Your life is your own, but remember that you also have a legion of loyal readers that you are now responsible for.

Andrews provides a glimpse inside the personal space of a poet who happens to be a hemophiliac. _Codeine Diary_ is a carefully wrought memoir that reveals Andrews' passion for language and life, and it is this love of language which makes this uniquely witty and introspective book more than personal. It is good that it was written.
- C.M.

As a former neighbor and friend of the Oylers, this story was even more touching. Ben's story is moving and I highly recommend this book.

This Book has giving me the courage to keep going for we also have been hit with many driffrent deaths in are family My mom with cancer my little Brother is still Hanging on when he was born the Doctor said that he will not live but for a few months but he fooled them then they said he would never beable to feed him self .. but he did ... then they said that he would never learn to walk .. but he did.. Reading Chris Oyler story of Ben has giving me faith to keep hanging on watching the TV movie has also giving me the faith to know that when his time does come I will be there to hold his hand so he may cross to the other land .. I felt as if I was part of Chris Oyler family an still do they had the faith that most of us only wish we had but if you read another book this one should be it if you can get your hands on this Book please read it for you never know when your faith will be tested .. I keep this Book I keep the movie right upon my shelf an I watch it many times when I need a lift up in my faith learning about Ben an his family has made me say hey when I die I will meet Ben in Heaven I'm sure he will meet me after all I still talk to him in spirit.

This was a wonderful, vivid and moving story. It moved me to tears. It's one of the best books I have ever read.

Having been a Romanov fan for over 30 years, I don't know how Journey by Robert and Suzanne Massie escaped my notice for so long. Written in journal style, both authors alternate entries that detail their experiences with hemophilia on many different levels.

First, their oldest child, Robert Jr. (Bobby) was born in 1956, and was quickly diagnosed with hemophilia. Journey chronicles their experiences in dealing with this disease on a first hand basis for the first 18 years of their son's life. Second, it shows how they educated themselves about this chronic, debilitating and sometimes fatal disease. At that time, the treatment of hemophilia was not very sophisticated, and they were often at the cutting edge of pioneering treatment. Thirdly, in the course of their research, they became fascinated with the story of Queen Victoria and how hemophilia (that was passed through her) affected so many of the royal houses in Europe. This led them to the last Tsar and Tsarina, Nicholas and Alexandra Romanov. The Tsarevich Alexei was a hemophiliac and how Nicholas and Alexandra dealt with this crisis changed the course of Russian history and the Russian monarchy. The Massie's also give great details about the different forms of hemophilia-some more severe than others. We learn that Alexei had a relatively mild form of the disease. While the only treatment available in the early 1900's was ice and immobilization, Bobby Massie required hundreds and hundreds of transfusions to get him through childhood. And finally, Journey details the politics of the American Red Cross, and various government agencies and private companies in dealing with the treatment and manufacturing of blood agents for hemophiliacs. Don't believe for a minute that their first priority is what is best for the patient.

This book also relates the story of how their research led to Robert's writing the classic, Nicholas and Alexandra. This was the book that hooked me on the Romanov's while still in high school, and is still today one of the best written on this subject.

Journey was published in 1973 and much has happened since then. There are now many more treatment options available in the treatment of hemophilia. Unfortunately, much of the blood supply used for treatment was contaminated by HIV in the 1980's and many hemophiliacs ended up with AIDS. But the good news is that Bobby has grown into a brilliant man. After receiving degrees from Princeton, Yale, and Harvard, he is now an Episcopal priest and a published, award winning author in his own right. He is married with several children. The bad news is that for whatever reason, Robert and Suzanne Massie's marriage did not survive. Still, despite being published so long ago, Journey is a good book to read for those wanting to know more background about how the Nicholas and Alexandra story came about.

Great book, on hemophilia. I had to do a research on it and it answered every single one of my answers wonderful

As the Romanov family is one of favorite subjects in history I picked up this book. While it was a great story (historical fiction account), I didn't like that the author towards the end of the book portrayed Rasputin in a good light. However, the author did a great job and should be commended on all her hard work researching the family and everything surrounding them during their time.

This book is a work of art! It combines science fiction, non-fiction and fiction to create a wonderful tale, another perspective of the Romanovs! This book is not just for teens!

THE CURSE OF THE ROMANOVS by Staton Rabin is an absolutely spell-binding story of Alexei Romanov and the Russian Revolution.

The story begins in Russia in 1916, where Alexei Romanov is the hemophiliac heir to the Russian throne. As a hemophiliac, Alexei cannot stop bleeding, and the only person who can seem to heal him is Father Grigory, otherwise known as Rasputin. So many of the Russian people despise Father Grigory and spread gossip about his drinking and womanizing, but Alexei's mother, the Tsarina, comforts Alexei by telling him that these are all lies and that Father Grigory is their dear friend.

Alexei believes his mother, until one night when he hears a conversation between his mother and Father Grigory that challenges everything he has been told. Not knowing where to turn, Alexei confides in his cousin, who decides to murder Father Grigory. But killing Father Grigory is not as easy as it appears, and when Alexei fears for his own life, he flees to the year 2010, using a method that Father Grigory himself taught Alexei.

In the future, Alexei meets a distant relative, Varda Rosenberg, who is currently working on a cure for hemophilia. When Alexei learns about the Russian Revolution and the fate of his family, he is determined to travel back to the past and rescue them from a horrible death at the hands of the Bolsheviks. With Varda's help, Alexei travels back into the past in a desperate attempt to save his family, his honor, and his way of life. But will he be able to change the course of history?

Staton Rabin somehow mixes the genres of science fiction and historical fiction to create a novel unlike any I have ever read. So much of the story is fact-based that you will find yourself believing every word. Rabin captures the voice of a young Alexei so well, as the book is written in diary form. At the end of the novel, author's notes clear up any misconceptions and separate fact from fiction.

So many stories have been written about the Romanov family, including the Disney movie Anastasia (Family Fun Edition w/Bartok the Magnificent). But Rabin's take on this famous story is so different than all of the others, it is definitely worth reading!

Reviewed by: Amber Gibson

Sometimes one can read on for pages and pages without ever raising an eyebrow or being forced to smile. I was forced to close the book on several occasions for fear of ruining the pages with the effluent of laughter-induced tears! I then attempted to regain my composure quickly so that I could keep on reading! MANY of my friends will be receiving copies, as I believe there is not a better qift than making someone smile and laugh! This book is histerical!

This book makes me wonder why I don't read more often -- or less! (I'm not sure which.) At any rate, I just couldn't put it down...and this was before I even had a chance to pick it up! Harry has really done wonders for those of us who love a blood-curdling tome.

Recovering in my own bed from recent surgery, I thought it would take more than a tall tale to make me laugh let alone smile, but VAMPIRE BLOOD BANK accomplished this with sweeping success. Combining a fun-loving fascination of vampires with the humoristic approach of hemophilia and other hominine struggles, this is one of the most entertaining spins on anthropomorphism I've read. An entertaining, fast read for anyone who enjoys humor, vampires, New York, and not least, the comedic climb and triumph of the misfit.

Fascinating read where the cure for the hemophilia community ended up killing those it meant to save. Resnick's style makes easy reading of a complex story.