Farewell Titanic: Her Final Legacy by Charles Pellegrino
Hard cover
352 pages
Published March 6, 2012
Can anyone say obsessed? I mean me -- although Mr. Pellegrino probably admittedly qualifies as well!
This book was fascinating. Charles Pellegrino has been studying the Titanic wreck for years, and is on the team of advisors for James Cameron's movie as well as his expedition dives -- all 13 of them!
Pellegrino also was friends with Walter Lord, who wrote the 1955 classic "A Night To Remember" based on all eye witness accounts of the sinking. This I now have downloaded on my Kindle and plan on reading it soon. Many of the accounts in Farewell are gleaned from over two thousand pages of interviews and correspondence between the two men, so these were my favourite parts of this book.
Although I also thoroughly enjoyed the science-ey parts of it, I got a bit tired of the whole "rusticle" thing. But that's just ME. Oh, and the 9/11 stuff, although extremely significant to the author and the expedition team on the day of the attacks (they were at sea at the wreck at the time), it did go on a bit too long in that vein.
I had just watched Ghosts of the Abyss the documentary that James Cameron did of his 2001 dive to the wreck, (which you can watch in its entirety on youtube) and this book was centered around this particular dive, so that made it probably more interesting than if I had NOT just seen the film.
All in all a good solid read, but not in my top recommendations for Titanic reads. What I really wanted was more of the accounts, which I had really not known, and Walter Lord's book will deliver them.
What was neat was the reference to some of the accounts and then directly referencing them with the 1997 film. Other than the personal accounts, that was the most enjoyable for me.
RATING: 3/5
Thursday, April 26, 2012
REVIEW: FAREWELL TITANIC BY CHARLES PELLEGRINO
Monday, April 23, 2012
MAILBOX MONDAY! APRIL 23RD
Hello all!
I haven't done a MM in a very VERY long time. I actually DID receive an exciting ARC in the mail today! I got the newest Hilary Mantel book that will be released in May!!! "Bring Up the Bodies" is the sequel to Wolf Hall and is all very Ann Boleyn. HUGE THANK YOU to Christine over at Henry Holt and Company!

I also bought a couple of books on my Kindle. After seeing Titanic in the theatre two weeks in a row, and with all of the info on it recently, I have become fairly obsessed and bought the 1955 classic A Night To Remember by Walter Lord, and Life Boat No. 8 by Elizabeth Kaye ( for 1.99!) today.
For more Mailbox Monday click here.
I haven't done a MM in a very VERY long time. I actually DID receive an exciting ARC in the mail today! I got the newest Hilary Mantel book that will be released in May!!! "Bring Up the Bodies" is the sequel to Wolf Hall and is all very Ann Boleyn. HUGE THANK YOU to Christine over at Henry Holt and Company!

I also bought a couple of books on my Kindle. After seeing Titanic in the theatre two weeks in a row, and with all of the info on it recently, I have become fairly obsessed and bought the 1955 classic A Night To Remember by Walter Lord, and Life Boat No. 8 by Elizabeth Kaye ( for 1.99!) today.
For more Mailbox Monday click here.
Monday, April 2, 2012
REVIEW: LEAVING THE SAINTS BY MARTHA BECK
Leaving the Saints: How I Lost the Mormons and Found My Faith
by Martha Beck
Kindle version
I have long been a fan of Martha Beck's writing, she has a great way of reaching her reader, and her wicked sense of humour is what I most adore about her. I am currently reading her latest book "Finding Your Way in a Wild New World" and it is just as great as the other ones I have read some of, Finding your North Star and Steering by Starlight. She is a trained sociologist and a Harvard graduate, so combining her scholarly training with her humanness and humour, makes for a very delightful read.
I stumbled across this book somehow online, and since I have always had a fascination with the Mormon religion and the mysteries surrounding it, I knew I would like it. And I did.
Here many of the bizarre dogma of the religion are blatantly published, and not from lack of fear of reprisal. Any ex-mormon who outs their secrets, like the one where they believe that God lives in a planet called Kolob (however, if you try to research this online you will come up with a he-said/she-said scenario - which is very frustrating). And that Joseph Smith translated ancient egyptian hieroglyphics into what is now known as the Book of Abraham. (this was later disputed when the Rosetti Stone was discovered, and after decades of studying it, the code for deciphering hieroglyphs was revealed). It turns out that what Joseph Smith claimed to translate into the mormon text, is a version of the book of the dead. Again, this is a fact, but I am pretty sure that any devout mormons reading this might have a thing or two to say about this unfolding of events.
I could go on and on, but will not, because this is what I found most fascinating about this book and I don't want to give too much away.
Martha's father, as it turns out, was a high ranking apologist in the church and much revered by its members. In her book, her claims of abuse at his hands was widely poo-pooed and she was made out by her family and other church members to be a raving lunatic. Well, who wouldn't be? Raised in that house!
The only criticism I have of this particular book of hers is that she had a tendency to use a lot of REALLY HARD WORDS. I know this may sound kind of childish, but what I mean is I thank God I had a dictionary in my kindle, or I would have probably given up on it already. The thing is she must have mentioned about 87 times that she went to Harvard, and she used these unbelievably difficult words that even in the context of the sentence I still had no idea what the hell they meant. And what was most annoying was that she COULD have used a more common word easily in its place, and save me the clicking. Let me give you some examples:
For more about Martha Beck, her books and her coaching visit Martha Beck.com.
by Martha Beck
Kindle version
I have long been a fan of Martha Beck's writing, she has a great way of reaching her reader, and her wicked sense of humour is what I most adore about her. I am currently reading her latest book "Finding Your Way in a Wild New World" and it is just as great as the other ones I have read some of, Finding your North Star and Steering by Starlight. She is a trained sociologist and a Harvard graduate, so combining her scholarly training with her humanness and humour, makes for a very delightful read.
I stumbled across this book somehow online, and since I have always had a fascination with the Mormon religion and the mysteries surrounding it, I knew I would like it. And I did.
Here many of the bizarre dogma of the religion are blatantly published, and not from lack of fear of reprisal. Any ex-mormon who outs their secrets, like the one where they believe that God lives in a planet called Kolob (however, if you try to research this online you will come up with a he-said/she-said scenario - which is very frustrating). And that Joseph Smith translated ancient egyptian hieroglyphics into what is now known as the Book of Abraham. (this was later disputed when the Rosetti Stone was discovered, and after decades of studying it, the code for deciphering hieroglyphs was revealed). It turns out that what Joseph Smith claimed to translate into the mormon text, is a version of the book of the dead. Again, this is a fact, but I am pretty sure that any devout mormons reading this might have a thing or two to say about this unfolding of events.
I could go on and on, but will not, because this is what I found most fascinating about this book and I don't want to give too much away.
Martha's father, as it turns out, was a high ranking apologist in the church and much revered by its members. In her book, her claims of abuse at his hands was widely poo-pooed and she was made out by her family and other church members to be a raving lunatic. Well, who wouldn't be? Raised in that house!
The only criticism I have of this particular book of hers is that she had a tendency to use a lot of REALLY HARD WORDS. I know this may sound kind of childish, but what I mean is I thank God I had a dictionary in my kindle, or I would have probably given up on it already. The thing is she must have mentioned about 87 times that she went to Harvard, and she used these unbelievably difficult words that even in the context of the sentence I still had no idea what the hell they meant. And what was most annoying was that she COULD have used a more common word easily in its place, and save me the clicking. Let me give you some examples:
- filial - Of, relating to, or befitting a son or daughter (she used this one a lot)
- ignominious - deserving or causing public disgrace
- noblesse oblige - nobility obliges
- ostensibly- apparently or purportedly but perhaps not actually.
- vociferous - vehement (okay, seriously, WHY could she just not say VEHEMENT - she says vehemently)
- amorphous - having no definite form
- obstreperous - noisy; difficult to control.
- amanuenses - a literary or artistic assistant
- stentorian - basically means someone in ther 70's.
- lugubrious - looking or sounding sad or dismal
- commodious - roomy and comfortable (I guess "roomy" was just to NOT HARVARD enough)
- perspicacity- keenness of mental perception (okay, this word just look impossible to pronounce, AM I RIGHT??!!)
- vertiginous - causing vertigo
Wow, seeing them all listed like that makes me realize that that IS a lot of big words, and maybe I'm not really just an idiot.
And not to mention Greek Mythology references up the ying-yang, like "Damocles' Sword of Mormon".
So, all in all, a very interesting account of a daughter of a famous mormon leaving the church, and a bit of the history of mormonism to boot.
RATING: 3/5
For more about Martha Beck, her books and her coaching visit Martha Beck.com.
Friday, March 23, 2012
REVIEW: SOLD BY PATRICIA MCCORMICK
SOLD by Patricia McCormick
Young Adult
I read this book in three hours. This is not to say that I am some super human speed reader, it's to say that the book is that good and a fast read due to the almost poem-like format that the author uses.
In a giving circle I attend, our very first meeting we donated our dining out dollars to a charity called Nepal Youth Foundation. Here we learned about how NYF has rescued over 4000 girls, thus far, from indentured servitude. In other words, these girls, some as young as 6 years old, were sold by their poverty stricken parents, to what they thought were rich people who they then would work for as maids. In some cases, this was partially true, in that the girls worked as maid slaves working in horrible conditions, with very little, if any, money going back to their families. Some were sold to brothels.
And this is the story of Lakshmi. She is a thirteen year old Nepali girl who loves her family, but maybe not her gambling stepfather. She enjoys the simple pleasures of rural life in Nepal; taking care of her pet goat, talking with her loving mother, and eyeing the boy with the slanted eyes that she has been betrothed to. Her future looks bright ahead, full of love and babies and family. She even is allowed to go to school.
Suddenly the monsoon season comes and devastates their rice paddy, and her stepfather announces that she must go to the city to get a job.
What happens next is not hard to guess, but the way that Patricia McCormick has written this story is powerful and heart wrenching in its innocence.
The opening pages plainly spell out what I believe so passionately. It is not just the burdens of women in the developing world, but the power you give to women, their families, and the community when you empower women in the world.
RATING: 5/5
For more information about the rescuing of girls in Nepal, you can visit Maiti Nepal (where the author did many interviews for research for this book) the winner of last year's CNN Hero Award, and Nepal youth Foundation.
Young Adult
I read this book in three hours. This is not to say that I am some super human speed reader, it's to say that the book is that good and a fast read due to the almost poem-like format that the author uses.
In a giving circle I attend, our very first meeting we donated our dining out dollars to a charity called Nepal Youth Foundation. Here we learned about how NYF has rescued over 4000 girls, thus far, from indentured servitude. In other words, these girls, some as young as 6 years old, were sold by their poverty stricken parents, to what they thought were rich people who they then would work for as maids. In some cases, this was partially true, in that the girls worked as maid slaves working in horrible conditions, with very little, if any, money going back to their families. Some were sold to brothels.
And this is the story of Lakshmi. She is a thirteen year old Nepali girl who loves her family, but maybe not her gambling stepfather. She enjoys the simple pleasures of rural life in Nepal; taking care of her pet goat, talking with her loving mother, and eyeing the boy with the slanted eyes that she has been betrothed to. Her future looks bright ahead, full of love and babies and family. She even is allowed to go to school.
Suddenly the monsoon season comes and devastates their rice paddy, and her stepfather announces that she must go to the city to get a job.
What happens next is not hard to guess, but the way that Patricia McCormick has written this story is powerful and heart wrenching in its innocence.
The opening pages plainly spell out what I believe so passionately. It is not just the burdens of women in the developing world, but the power you give to women, their families, and the community when you empower women in the world.
"Let me go to the city," I say. "I can work for a rich family like Gita does, and send my wages home to you."
Ama strokes my cheek, the skin of her work worn hand as rough as the tongue of a newborn goat. "Lakshmi, my child," she says. "You must stay in school, no matter what your stepfather says."
Lately, I want to tell her, my stepfather looks at me the same way he looks at the cucumbers I'm growing in front of our hut. He flicks the ash from his cigarette and squints. "You better get a good price for them." He says.
When he looks, he sees cigarettes and rice beer, a new vest for himself.
I see a tin roof.
RATING: 5/5
For more information about the rescuing of girls in Nepal, you can visit Maiti Nepal (where the author did many interviews for research for this book) the winner of last year's CNN Hero Award, and Nepal youth Foundation.
Wednesday, March 21, 2012
REVIEW: STORIES I ONLY TELL MY FRIENDS by Rob Lowe
Stories I Only Tell My Friends
by Rob Lowe (Kindle Version)
Okay, so normally I would never have picked this book up, let alone read it. But, a friend of mine said it was awesome, and because I work in the film business, she thought I would appreciate it on that level.
She was right.
Rob Lowe can actually write, as it turns out, and I literally could not put this book down. Basically there are no big surprises here, but one thing that I really appreciated about this book was the way he handled certain... shall we say... more colourful areas of his life. Rob Lowe is classy, or at least he writes his memoirs with candor and discretion. Where some other celebs would dive right in to every meaty and pornographic detail of every aspect of their life, Rob Lowe does none of that. Oh, he covers all of the bases, even the hugely popular video romp he had with a couple of underage girls, but he glosses over things in a way that at the same time leaves you actually wanting the meat and porn, but being relieved and kind of satisfied that he has left you not feeling dirty after you have read it.
The book starts with his childhood and moves up through to his life as it stands today. I have to respect the fact that although he did veer off the highway of life down the road of has-been child actor a la Gary Coleman, he managed to course correct and create a great and memorable career in the drama world and, who knew, comedy of all things!
There is only one criticism I have of his book, and really it's a very minor one and actually made me kind of laugh in a way. Okay, well maybe there was two.
The first one was that he had a tendency to end chapters with a BIG REVEAL, which started to become extremely annoying and contrived and had me eye rolling a few times. Okay, Rob, I GET IT, you are describing something that happened, and describing the person it happened with and low-and-behold the paragraph/chapter ends with..."so, I turned to her as she walked away and said, 'Nice to meet you too, Daryl Hannah!'" Or, after talking about how much he wanted to meet his buddy Charlie's Dad, who was a famous movie star and then fatefully one Halloween night Charlie, Emilio, Chad and Rob were out creating shinanigans and a crazy man in camouflage make-up and fatigues jumps out of the bushes yelling about how he is "on patrol tonight! And there will be no monkey business!" And the paragraph ends with "Hey, Lowe, you said you wanted to meet Martin Sheen? Well, now you have."
I guess you have to read it to see what I mean, I could list about a dozen examples like this. I'm not saying that none of these events ever happened, I'm just saying that a little variation in delivery would have been nice.
The other thing is how Rob managed to stumble across people and points in the history of the entertainment business where, although they probably did happen the way he describes, are so numerous in number and he just casually happens to be in certain places, that I have to admit it makes me want to call foul.
For example: He was at a baseball game with his brother, who was getting harangued by another fan. An older guy steps in to help out, and it turns out he just happens to be the head puppeteer of the Muppets. Okay... it could happen. But then he invites them, kids he has JUST MET, to visit the set of a "little known film" (as he is always refers to in these such situations) called The Muppet Movie. It just so happens that he just coincidentally managed to stroll onto the set when they were filming the most famous scene in the entire film, the part where Kermit sings "The Rainbow Connection". Once again, leaving the name of the film to THE END, like I didn't see it coming like a parade float down the #1 highway with police lights flashing.
And then the time when he was in England and Sting invited him and his wife to visit, which they did, which I think is completely believable. And as they were hanging around at his house, Pavarotti "dropped" by and him and Sting started recording their duet "Panis Angelicus" for a new album. Sting and Rob weep openly as Pavarotti hits the high notes. Beautiful image. And then after Pavarotti leaves Rob says that him and his wife Sheryl are once again wowed as Sting records "If I ever Lose My Faith in You". Not some other obscure song from any other album, but one of his most famous ones.
There are a million of these.
I'M JUST SAYING.
But then again, I have a few stories that I no longer really share unless someone asks that involve famous people and visiting them in LA etc, that I am quite sure nobody believes, but they actually did happen exactly as I tell it. No lie. And I am not a celebrity.
I have to tell you there is one brilliant bit that still has me laughing. Rob worked with Christopher Walken and writes how Christopher talks in a way that I could have never imagined doing, but it WORKS. It goes like this...
"I saw. Your name. It's good. It was on a list. Of the cast. I'm ...glad it was you. I wasn't sure. If it was true."
Seeeriously! Is that not the best? I love Christopher Walken, like HUGE love, like if I worked with him I think I would pee every single day, kind of love.
I am going to give this a 4/5 because I think it is a great fast read that, if you knew anything about Rob Lowe in the 80's, or even if you know him from his recent work, it is a very honest look into how fame is lusted after like a porn star, and once claimed, it can have the same affect. It is ellusive, and can disappear as quickly as it showed up, and leave you feeling used and abused and taken advantage of. But once someone like Rob Lowe has the right perspective, life just seems all the more sweeter. I loved the arch he painted with his words, the arch of his dream, and how now he is living the dream he never knew was his to begin with.
RATING: 4/5
by Rob Lowe (Kindle Version)
Okay, so normally I would never have picked this book up, let alone read it. But, a friend of mine said it was awesome, and because I work in the film business, she thought I would appreciate it on that level.
She was right.
Rob Lowe can actually write, as it turns out, and I literally could not put this book down. Basically there are no big surprises here, but one thing that I really appreciated about this book was the way he handled certain... shall we say... more colourful areas of his life. Rob Lowe is classy, or at least he writes his memoirs with candor and discretion. Where some other celebs would dive right in to every meaty and pornographic detail of every aspect of their life, Rob Lowe does none of that. Oh, he covers all of the bases, even the hugely popular video romp he had with a couple of underage girls, but he glosses over things in a way that at the same time leaves you actually wanting the meat and porn, but being relieved and kind of satisfied that he has left you not feeling dirty after you have read it.
The book starts with his childhood and moves up through to his life as it stands today. I have to respect the fact that although he did veer off the highway of life down the road of has-been child actor a la Gary Coleman, he managed to course correct and create a great and memorable career in the drama world and, who knew, comedy of all things!
There is only one criticism I have of his book, and really it's a very minor one and actually made me kind of laugh in a way. Okay, well maybe there was two.
The first one was that he had a tendency to end chapters with a BIG REVEAL, which started to become extremely annoying and contrived and had me eye rolling a few times. Okay, Rob, I GET IT, you are describing something that happened, and describing the person it happened with and low-and-behold the paragraph/chapter ends with..."so, I turned to her as she walked away and said, 'Nice to meet you too, Daryl Hannah!'" Or, after talking about how much he wanted to meet his buddy Charlie's Dad, who was a famous movie star and then fatefully one Halloween night Charlie, Emilio, Chad and Rob were out creating shinanigans and a crazy man in camouflage make-up and fatigues jumps out of the bushes yelling about how he is "on patrol tonight! And there will be no monkey business!" And the paragraph ends with "Hey, Lowe, you said you wanted to meet Martin Sheen? Well, now you have."
I guess you have to read it to see what I mean, I could list about a dozen examples like this. I'm not saying that none of these events ever happened, I'm just saying that a little variation in delivery would have been nice.
The other thing is how Rob managed to stumble across people and points in the history of the entertainment business where, although they probably did happen the way he describes, are so numerous in number and he just casually happens to be in certain places, that I have to admit it makes me want to call foul.
For example: He was at a baseball game with his brother, who was getting harangued by another fan. An older guy steps in to help out, and it turns out he just happens to be the head puppeteer of the Muppets. Okay... it could happen. But then he invites them, kids he has JUST MET, to visit the set of a "little known film" (as he is always refers to in these such situations) called The Muppet Movie. It just so happens that he just coincidentally managed to stroll onto the set when they were filming the most famous scene in the entire film, the part where Kermit sings "The Rainbow Connection". Once again, leaving the name of the film to THE END, like I didn't see it coming like a parade float down the #1 highway with police lights flashing.
And then the time when he was in England and Sting invited him and his wife to visit, which they did, which I think is completely believable. And as they were hanging around at his house, Pavarotti "dropped" by and him and Sting started recording their duet "Panis Angelicus" for a new album. Sting and Rob weep openly as Pavarotti hits the high notes. Beautiful image. And then after Pavarotti leaves Rob says that him and his wife Sheryl are once again wowed as Sting records "If I ever Lose My Faith in You". Not some other obscure song from any other album, but one of his most famous ones.
There are a million of these.
I'M JUST SAYING.
But then again, I have a few stories that I no longer really share unless someone asks that involve famous people and visiting them in LA etc, that I am quite sure nobody believes, but they actually did happen exactly as I tell it. No lie. And I am not a celebrity.
I have to tell you there is one brilliant bit that still has me laughing. Rob worked with Christopher Walken and writes how Christopher talks in a way that I could have never imagined doing, but it WORKS. It goes like this...
"I saw. Your name. It's good. It was on a list. Of the cast. I'm ...glad it was you. I wasn't sure. If it was true."
Seeeriously! Is that not the best? I love Christopher Walken, like HUGE love, like if I worked with him I think I would pee every single day, kind of love.
I am going to give this a 4/5 because I think it is a great fast read that, if you knew anything about Rob Lowe in the 80's, or even if you know him from his recent work, it is a very honest look into how fame is lusted after like a porn star, and once claimed, it can have the same affect. It is ellusive, and can disappear as quickly as it showed up, and leave you feeling used and abused and taken advantage of. But once someone like Rob Lowe has the right perspective, life just seems all the more sweeter. I loved the arch he painted with his words, the arch of his dream, and how now he is living the dream he never knew was his to begin with.
RATING: 4/5
Sunday, March 18, 2012
REVIEW: INFIDEL by Ayaan Hirsi Ali
I have wanted to read this book for ages, and I am so glad that I did. This is a perfect example of me not knowing much about a subject and then learning A LOT by reading a book about it. In this case, Ayaan Hirsi Ali's life was a window into the muslim world from a woman's perspective; although I know that this is not necessarily atypical of a muslim woman's life. I get that. But the opening of this book is just riveting. It starts out with the violent murder of Theo Van Gogh in the streets of Amsterdam. The killer shot him numerous times, and then plunged two knives into his chest pinning a note to his victim's body. The note threatened Ayaan Hirsi Ali along with western countries, among other things.
Now THAT got my attention.
Ayaan's life was filled with spiritual questions that at times had her re-embracing Islam and at other times questioning the very existence of Allah. Having been there in my own life, I related to her on this very basic level. As a young adult I imagine many people question the faith that they were raised in, and some embark on their own way, and others cling to the religion of their youth.
One area that I felt I learned the most about was in female genital mutilation, which she talks about a fair amount, and being a chapter leader with Dining for Women and an activist for women's rights all over the world, I was fascinated to have an insiders look into this practice. Many women in cultures that still practice FGM actually take it as an honor and a right of passage. Some women hold it as proud badge that they have been cut, and worried that if they were not, that no man would ever marry them because they would be seen as "unclean". After reading "Half the Sky", Nicholas Kristof also alluded to this fact, and wrote that in order for this practice to end, it would take many years of undoing the traditional, religious and cultural beliefs of the people with which this is an everyday occurrence. It reminded me that when trying to fight for women's rights in other countries, that we must also look at how certain barbaric practices in our culture, may have other meanings for women in those areas. It reminded me how complicated these issues are. And I needed reminding.
The other thing that struck me, was how Ayaan was living a cloaked life as a muslim, she was covered, she was following all of the rules of Islam, yet at the same time was reading American romance novels and watching North American television shows. She was seeing how women in the west had much more freedom, they talked back to their husbands, they had jobs. This was all very appealing to her, and planted a seed that would stubbornly grow, until she could not reject the desire to be free any longer. It made me realize that countries that suppress the female population, would feel the need to censor their lives, because once the women see how other women are living, some would be like Ayaan and want to escape to another area where they could live free, or more free.
Ayaan was severely abused by her mother, I mean like "Mommy Dearest" kind of abused. But what is interesting is that she doesn't really realize it, I don't think. This made me very sad for her.
The first 3/4 of the book was excellent, but once she entered school and politics, I felt it just lost its personal touch and was just a list of accomplishments and more of an autobiographical list of events. In fact, after her first relationship, which she presented in such interesting detail, and her fears of intimacy with a man etc, when she finally did fall in love with a European, there was no mention of anything that after almost 1/2 of the book spent on her cultural differences and religious issues surrounding relationships and men. That was frustrating. It was just plainly put, we met, we fell in love.
Ayaan's tireless and relentless call to action to give more rights and freedoms to muslim women all over the world must be applauded, but it does not come without controversy and threat to her personal safety at all times. She started a foundation called AHA Foundation that works to protect and defend the rights of women in the West from oppression justified by religion and culture.
So, all in all, I'm glad I read it. I have no plans to read Nomad, because quite frankly, I can't imagine what else could have happened since Infidel that could fill an entire other book, but maybe I'm wrong. Anybody out there read both books? Is it worth reading?
Love to hear your thoughts...
RATING: 3/5
Thursday, January 12, 2012
Please help my friend's niece 15 year old LEXI!
Lexi is a beautiful 15 year old girl who lives in Calgary, Alberta Canada. She has an EXTREMELY rare disease and desperately needs your help! Read her story:
Lexi is a beautiful 15 year old girl with a bone tumor in her skull. It causes her incredible pain. We are here to support her and her family to get the care Lexi needs.
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Lexi is a stunningly gorgeous 15 year old ballerina. Who loves nothing more than to spread her wings on stage. One of the most gentle souls I know Lexi always puts everyone before her.. Her outlook and smile are an inspiration to all.
Lexi has a rare bone tumor in her skull (5cmx7cm) that has caused an even more rare nerve dystrophy in her head called CRPS or RSD. Usually found in the arm or leg CRPS causes excruciating debilitating pain that is untouched by narcotics. With intense physio this can be treated in the arm or leg however there is no treatment for CRPS of the cranial nerves. Lexi has multi system issues.. She is believed to have an undiagnosed mutation of the cyropyrin gene that has left her allergic to her internal organs. She becomes covered in painful rashes and struggles to take breaths. Her body spasms, her jaw locks. Her skin splits and bleeds. Every movement or trauma causes more pain.Because of the cryopyrin issue drugs like morphine and 90 percent of the drugs that would help her suffering cannot be given as they compound the problem. Her lips swell so much they split open. Her hearing is so sensitive breathing around her makes her cry. She can no longer eat and is tube fed...even with the tube feed she continued to lose weight and at 102 lbs she is now on intravenous feeds running the risk of liver damage. No one in alberta knows how to diagnose or treat Lexi so we have spent a year trying to get help and really only putting out fires or what we call symptom chasing. She is so complex we are left just trying to keep her alive. We have exhausted ALL options at Alberta Children's Hospital. We are currently awaiting a transfer to toronto sick kids to meet with the specialists and genetic immunologists who might be able to help her. In the meantime she suffers incredibly. I have not really been able to work since may and her insurance provider removed her. She does not qualify for health insurance as she has been deemed critical. Since when I am working I do quite well she does not qualify for govt assistance. The govt drug programs do not cover most of her drugs and now even the hospital doesn't cover some of them. I have exhausted my savings and the bills keep coming. We aren't even sure what the bill for the transfer to toronto will be as her testing flights nurses etc may not even be covered. With med bills well into the thousands each month I am running out of options. I hear everyday what can I do to help...help me save her. Even the comforts she needs like the softest of blankets and massage therapists that will come to the hosp ...all add up. Even trying to pay our reg bills with no income is becoming a struggle. Childrens cancer is the most funded area... Millions upon millions are donated each year. Diseases like lexi's get nothing...the rest of the hosp gets nothing. These kids die. This is a kid that would do anything and everything to make someone smile or ease their pain for a minute...please help me to continue to do it for her.
Please visit her Facebook page right now and donate as much as you can! She is fighting for her life!
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