What do you think?
Rate this book
A Roll of the Dice: a story of loss, love and genetics
Mona Dash’s first child is born with SCID (Severe Combined Immuno-Deficiency) for which there is no treatment in his country. And so begins her roller-coaster journey which spans ten years, takes her from India to London, and involves her in the complexities of genetic medicine. Mona Dash writes her story of genetics roulette without self-pity, with astounding courage and even humour. Her memoir contains valuable information for couples facing infertility and complicated pregnancies, for parents of premature babies and children with SCID. With an introduction by Professor Bobby Gaspar of Great Ormond Street Hospital, pioneer in gene therapy.
234 pages, Kindle Edition
Published April 22, 2019
1 person is currently reading
9 people want to read
About the author
Mona Dash
12 books3 followersBorn and brought up in the eastern coastal state of Orissa in India, Mona Dash comes from a family of artistically inclined professionals. Mona grew up in an environment defined by books and debates, as her mother is a poet and writer and their house was usually filled with writers discussing literature, art, music and anything ‘different.’ Mona’s sojourn into writing started with dabbling in poetry while in school and went on to produce a collection of poems Dawn Drops. She has been listed in various competitions, and published widely in various journals and anthologies. She is part of the British South Asian writers collective, The Whole Kahani. With a degree in engineering, an MBA, and a Masters in Creative Writing, she currently works in an international Telecom company, but spends every free waking moment writing and plotting stories. Most of Mona’s work explores themes of love, displacement and belonging. Relationships, subsequent betrayal, and a quest for something fulfilling also emerge as strong themes in her work. Mona currently lives in London with her husband and young son. She doesn’t believe that not having time is an excuse to not read and write; and hence is a stranger to television and reads/writes on trains, in cars, waiting in a queue, late in the night – like anyone who has been afflicted by the written word.
Ratings & Reviews
Friends & Following
Create a free account to discover what your friends think of this book!
Community Reviews
Displaying 1 - 9 of 9 reviews
May 13, 2021
There are many kinds of books. Some of those most ‘worthy’ if we were to lend value, are those written about endurance and surviving adversity. Only the other day a friend asked me why most praised authors had some kind of adversity associated with their life, or were applauded for their success, given all the obstacles they had to overcome. We discussed how it is surely human nature, to be attracted to those stories of overcoming. Maybe because it resonates with us, maybe because we know how most of us struggle to overcome, and if you can succeed in spite of this, that’s gotta be a story worth hearing.
Wrong or right, we are drawn to resilience and the idea of going forward even as we get held back. Life can be a real challenge and on the one hand there are those who never want to think about challenges, and others who find they inspire them to keep going. Whilst I find value in positive stories without any sight of a challenge I am drawn to the honesty and courage it takes to talk of a difficult time in your life and how you overcame it or how it changed you, because to me anyway, that seems real. And I like real.
Mona Dash has written just such a book. I had just finished Azra Raza’s deeply stirring account of working with childhood cancer, called The First Cell, when I read A ROLL OF THE DICE and I was in the right head space to deeply appreciate the unique challenges of a rare illness, in this case, SCID (Severe Combined Immuno Deficiency) as described in this book. This is very timely, because the entire world has become hyper aware of illness and rare disease as a result of Covid-19 and perhaps because of this, we are more in tune with the value of knowing more about such things. If one makes the argument this is negative, I would answer, how can knowledge ever be anything but beneficial? By understanding more of rare disease, we comprehend why certain decisions are made, what is lacking in research and our medical communities and perhaps take on some social responsibility for furthering medical advancements, rather than believing they could never affect us. Covid-19 has surely proven to us all, none of us are immune from illnesses we had never know about.
If you don’t really appreciate reading about challenging situations involving medical issues, then A ROLL OF THE DICE may not be appreciated by you, but I would urge you to reconsider, because these are situations that aren’t isolated, they could happen to any of us, and compassion and understanding of what these families have to endure, is the very least we can offer as human beings.
Can you imagine having a child who has SCIDs which was once a virtual death sentence, and not living in a country that could even reliably treat your child? Or the ramifications of knowing you carry in your genes, this genetic heritage and any child you have as a result, could be affected or a carrier for their future children? Inherited illnesses are still a taboo subject in so many countries, where the burden of blame goes on the mother, and the associated shame can ruin lives as much as the reality of being a carrier.
In those counties that can work with a SCIDs child, the sheer expense, uncertainty, and extremity of illness, is almost beyond comprehension. Without lobbying and patient advocacy, improvements may have been slower, and it shows the power of a grass-roots movement and how important awareness and education on rare diseases is. The impact of genetic disease on families is often such a private horror, that the rest of the world is blithely unawares. Books like this need to be written to ensure we galvanize behind these rare diseases to bring about world-wide change and not stick our heads in the sand. As we learned from Covid-19, there are many among us, who if they are not personally affected simply do not care about the fates of others. It is my hope there are enough among us who DO care about what others endure, even if we ourselves never do. It is not hard to empathize with suffering when you open your heart and truly care. It’s something we can all relate to on some level.
I have battled a rare illness since I contracted it via a virus in 2017 and understand a little of the horrors of not being diagnosed and the uncertainty of severe illness. But I have no comprehension of what it was like for Mona Dash to experience this as a mother, watching her child suffer. Surely this is the worst agony possible, and the courage it took for Mona to write this book is quite astounding. Mona’s love of her two sons and her fierce determination to not give up, instills in me, a faith in humanity and an awareness of the strength of mothers. As Professor Gaspar says in his introduction, this can teach doctors more about being human and caring toward their patients and the healing power of compassion.
Mona Dash has done the impossible. She has deftly and beautifully authored a book that is both educational, emotional, valuable, and necessary. On a subject most could not have the strength to write about, her own harrowing experiences with pregnancies and SCIDs. Mona had already lost a child years before this second story begins, and known the agonies this brought, she had already gone through this in India losing her first born, and to have the strength to write about this, and help other families as well as educate us on SCIDS and how the cruel realities of economics and your country of birth, play such an important role in survival, is beyond impressive. But impressive is the wrong world, it’s too cavalier for such a heart-wrenching, serious subject. Mona Dash is a truth speaker. Her words have power.
On a personal note, the details are crushing. What Mona recalls of these experiences will stay with me as they have stayed with her, because her ability as a writer to convey the smallest detail, is part of her talent and her mission to truly convey the reality of this condition and what it does to families. The intensity of her experience and how badly others react, builds a picture we want to tear down and reform with education and awareness. The only way we achieve this, is if books like A ROLL OF THE DICE are written by the brave.
As Mona describes, in the Hindu faith a child who has not turned one year old, is not cremated, as with most Hindu rites, but buried. The cold horror of not understanding why her child could not be cremated, is but one example of the wasteland Mona had to walk through as a grieving mother. Mona Dash is also an exquisite writer, which of course, seems at odds with the story she is telling, but it is through her ability as a writer she is able to convey this difficult story, with lasting grace, whilst not losing any of its momentum. Only a true writer, can craft an unforgettable story out of tragedy and urge the reader onward even as they want to flee.
My stepmother lost a child to SIDS (Sudden Infant Death Syndrome) and I have always been by-proxy aware of the grief and horror of losing a born child. This is different to miscarriage, which many women have endured, (in no way suggesting this is less awful) because when pregnant we believe, if only the child is born, it will survive. To have a child born healthy (or so we think) and then die, even as we know they are ill, is beyond our reason. To lose a little being who we have brought into this world, has no words. To have another child and not know if they will survive, most of us cannot even comprehend. To write a book about this, I don’t even have words to illustrate what it must take and where the author found her language, other than through her wish to show others what can and does happen, to share this story in a world that often refuses truths because of the sheer horror of them. But there is also a lot more than horror in this book, there is hope, strength, love.
I have read books about loss, grief and illness, that were too overwhelming to get through. A ROLL OF THE DICE is not such a book. Mona Dash has been able to craft this story in such a way the reader is not overwhelmed, which may seem overly generous given it’s her story and she has every right to it, but when authoring a book and expecting others to read, one must consider this, even more so if the subject is harrowing. Just as with Azra Raza’s book The First Cell, Mona has used her skill and knowledge as a writer to achieve this and create a book that is highly readable.
As an Indian woman living now in the UK, Mona also shares a culture many of us find fascinating and intriguing. The emphasis on having a child, even as you have married and are focused on your career, is an age-old problem for women throughout the world at different epochs India is breaking the glass ceiling for its women, but still experiencing depending upon region, many of the issues that have plagued women throughout history, one being the expectations levied upon women and the idea of being able to do ‘everything.’
Mona’s story of her experiences of moving to Calcutta and the challenges she faced in this different culture, help remind us women struggle for a variety of reasons, not least when we they are striving for equality and kept down by social mores. Even if this wasn’t a story about SCIDs and other complications of pregnancy, the book would be a valuable insight into a young woman’s experience in the world of work and her move to another country. I say this, because a good writer, writes multiple layers in their work, and value lies in the entirety but can be broken down into individual strengths as well.
India has a very high bar as far as expectations and as such, women are expected to return to work promptly after having children, which ironically is not the case in some Western countries where women’s roles as mothers are given more time off work. Having immigrated from Europe to America I can appreciate Mona’s experience and her determination to prove herself, and the pressures that cause. I am a believer we need to deemphasize the adage ‘work at any cost’ but I respect that with increasing competition, if you can’t, someone else will, and how much pressure that puts on women especially, when having children, to return to work. A ROLL OF THE DICE also brings up the issues for women, where their work is ‘a second skin’ and how you navigate success with having a family.
A ROLL OF THE DICE also examines the very private musings women have about childbirth and being mothers. The cultural emphasis in all countries, of ‘perfection’ and fitting in immediately, isn’t what many women experience, and yet little is said about C-Section pain, or the difficulty of adjusting to not working or how many do not feel ‘rested’ by being told to rest. These intensely female experiences are maligned because we want to show ‘the best of’ which only puts pressure on women to conform to an ideal that may actually, not exist.
If I were to take the stories of motherhood and adjustment alone, they would stand as a powerful modern testimony to the hypocrisy surrounding the birthing experience and motherhood, and the pressure we put on young women to confirm to often inaccurate ideals. My own mother had a very similar experience, unable to breastfeed, loathing of the traditional tropes of motherhood and its generalized expectations, I am acutely aware this is a layer of pressure women could well do without, and one many of us do not have the courage to talk about. If I had to point to one theme, I found most powerful in A ROLL OF THE DICE it would be this ability Mona Dash has, for drawing the reader in and teaching them truths few of us have the courage to speak.
The vital information that Mona’s parents lost a son at six months of age, did nothing to help doctors discover what was wrong with little Akshyat, and the story of how hard they struggled to find an answer, is testimony to the challenges of rare illnesses and the inability of the medical profession to have accurate answers to many of these phenomena and trying to put pieces of a huge puzzle together to reach a diagnosis. Being told your child is ‘not normal’ and being shamed for how you treated the illness, is something many parents experience even to this day. Mona describes the fury of parents trying to find the right care in a huge country, with multiple bewildering options and then a second chapter in a foreign country, battling anew.
I was deeply moved by the entirety of the book, and the language Mona Dash possesses in abundance to describe intelligently, the fierce unyielding devastation; “Others said, ‘I could never cope with such pain,’ as if one had a choice.” So many lines will stay with me long after this book, this is a book I will recommend many to read, they may wonder why me? But after reading, they too will recommend. “Have you held a baby, dead, in your arms? Do you know how suddenly, in just a few minutes, the soft dimpled limbs become dimensionless and rigid? The breath is sucked out and a woodenness nests in the body. What does lifeless truly mean, do you know?” There are numerous pockets of incredible wisdom and insight throughout this book you’ll never erase, a penetration through suffering, to the very dermis of what life is truly about; “Employers like to see drive and ambition, whether fueled by despair or not.”
Being told a bone marrow transplant in another country is the only solution, and trying to raise $100,000 for this procedure, is the painful reality of many parents of babies with SCIDs. I want to walk you through the rest of this unforgettable story, including infertility and a fight with endometriosis, but that’s not the purpose here. My purpose is to ask you to read this book yourself, because from it, you will gain both humanity and humility and you will be glad for any health you have, and aware, very aware, of how precious health is. How if you do one thing, it should be to not give up, or succumb to despair, but to recognize, within a broken system, there is hope. And within you, there is fortitude for facing what cannot be faced.
“The constant communication with complete strangers, the hope and the goodwill I received from people I had never seen, nor would ever see, shaped my days. That interaction helped me survive.”
“It’s not for us to spurn this life we have been given. Until this soul himself wants to go, until then, we will do our best.”
Wrong or right, we are drawn to resilience and the idea of going forward even as we get held back. Life can be a real challenge and on the one hand there are those who never want to think about challenges, and others who find they inspire them to keep going. Whilst I find value in positive stories without any sight of a challenge I am drawn to the honesty and courage it takes to talk of a difficult time in your life and how you overcame it or how it changed you, because to me anyway, that seems real. And I like real.
Mona Dash has written just such a book. I had just finished Azra Raza’s deeply stirring account of working with childhood cancer, called The First Cell, when I read A ROLL OF THE DICE and I was in the right head space to deeply appreciate the unique challenges of a rare illness, in this case, SCID (Severe Combined Immuno Deficiency) as described in this book. This is very timely, because the entire world has become hyper aware of illness and rare disease as a result of Covid-19 and perhaps because of this, we are more in tune with the value of knowing more about such things. If one makes the argument this is negative, I would answer, how can knowledge ever be anything but beneficial? By understanding more of rare disease, we comprehend why certain decisions are made, what is lacking in research and our medical communities and perhaps take on some social responsibility for furthering medical advancements, rather than believing they could never affect us. Covid-19 has surely proven to us all, none of us are immune from illnesses we had never know about.
If you don’t really appreciate reading about challenging situations involving medical issues, then A ROLL OF THE DICE may not be appreciated by you, but I would urge you to reconsider, because these are situations that aren’t isolated, they could happen to any of us, and compassion and understanding of what these families have to endure, is the very least we can offer as human beings.
Can you imagine having a child who has SCIDs which was once a virtual death sentence, and not living in a country that could even reliably treat your child? Or the ramifications of knowing you carry in your genes, this genetic heritage and any child you have as a result, could be affected or a carrier for their future children? Inherited illnesses are still a taboo subject in so many countries, where the burden of blame goes on the mother, and the associated shame can ruin lives as much as the reality of being a carrier.
In those counties that can work with a SCIDs child, the sheer expense, uncertainty, and extremity of illness, is almost beyond comprehension. Without lobbying and patient advocacy, improvements may have been slower, and it shows the power of a grass-roots movement and how important awareness and education on rare diseases is. The impact of genetic disease on families is often such a private horror, that the rest of the world is blithely unawares. Books like this need to be written to ensure we galvanize behind these rare diseases to bring about world-wide change and not stick our heads in the sand. As we learned from Covid-19, there are many among us, who if they are not personally affected simply do not care about the fates of others. It is my hope there are enough among us who DO care about what others endure, even if we ourselves never do. It is not hard to empathize with suffering when you open your heart and truly care. It’s something we can all relate to on some level.
I have battled a rare illness since I contracted it via a virus in 2017 and understand a little of the horrors of not being diagnosed and the uncertainty of severe illness. But I have no comprehension of what it was like for Mona Dash to experience this as a mother, watching her child suffer. Surely this is the worst agony possible, and the courage it took for Mona to write this book is quite astounding. Mona’s love of her two sons and her fierce determination to not give up, instills in me, a faith in humanity and an awareness of the strength of mothers. As Professor Gaspar says in his introduction, this can teach doctors more about being human and caring toward their patients and the healing power of compassion.
Mona Dash has done the impossible. She has deftly and beautifully authored a book that is both educational, emotional, valuable, and necessary. On a subject most could not have the strength to write about, her own harrowing experiences with pregnancies and SCIDs. Mona had already lost a child years before this second story begins, and known the agonies this brought, she had already gone through this in India losing her first born, and to have the strength to write about this, and help other families as well as educate us on SCIDS and how the cruel realities of economics and your country of birth, play such an important role in survival, is beyond impressive. But impressive is the wrong world, it’s too cavalier for such a heart-wrenching, serious subject. Mona Dash is a truth speaker. Her words have power.
On a personal note, the details are crushing. What Mona recalls of these experiences will stay with me as they have stayed with her, because her ability as a writer to convey the smallest detail, is part of her talent and her mission to truly convey the reality of this condition and what it does to families. The intensity of her experience and how badly others react, builds a picture we want to tear down and reform with education and awareness. The only way we achieve this, is if books like A ROLL OF THE DICE are written by the brave.
As Mona describes, in the Hindu faith a child who has not turned one year old, is not cremated, as with most Hindu rites, but buried. The cold horror of not understanding why her child could not be cremated, is but one example of the wasteland Mona had to walk through as a grieving mother. Mona Dash is also an exquisite writer, which of course, seems at odds with the story she is telling, but it is through her ability as a writer she is able to convey this difficult story, with lasting grace, whilst not losing any of its momentum. Only a true writer, can craft an unforgettable story out of tragedy and urge the reader onward even as they want to flee.
My stepmother lost a child to SIDS (Sudden Infant Death Syndrome) and I have always been by-proxy aware of the grief and horror of losing a born child. This is different to miscarriage, which many women have endured, (in no way suggesting this is less awful) because when pregnant we believe, if only the child is born, it will survive. To have a child born healthy (or so we think) and then die, even as we know they are ill, is beyond our reason. To lose a little being who we have brought into this world, has no words. To have another child and not know if they will survive, most of us cannot even comprehend. To write a book about this, I don’t even have words to illustrate what it must take and where the author found her language, other than through her wish to show others what can and does happen, to share this story in a world that often refuses truths because of the sheer horror of them. But there is also a lot more than horror in this book, there is hope, strength, love.
I have read books about loss, grief and illness, that were too overwhelming to get through. A ROLL OF THE DICE is not such a book. Mona Dash has been able to craft this story in such a way the reader is not overwhelmed, which may seem overly generous given it’s her story and she has every right to it, but when authoring a book and expecting others to read, one must consider this, even more so if the subject is harrowing. Just as with Azra Raza’s book The First Cell, Mona has used her skill and knowledge as a writer to achieve this and create a book that is highly readable.
As an Indian woman living now in the UK, Mona also shares a culture many of us find fascinating and intriguing. The emphasis on having a child, even as you have married and are focused on your career, is an age-old problem for women throughout the world at different epochs India is breaking the glass ceiling for its women, but still experiencing depending upon region, many of the issues that have plagued women throughout history, one being the expectations levied upon women and the idea of being able to do ‘everything.’
Mona’s story of her experiences of moving to Calcutta and the challenges she faced in this different culture, help remind us women struggle for a variety of reasons, not least when we they are striving for equality and kept down by social mores. Even if this wasn’t a story about SCIDs and other complications of pregnancy, the book would be a valuable insight into a young woman’s experience in the world of work and her move to another country. I say this, because a good writer, writes multiple layers in their work, and value lies in the entirety but can be broken down into individual strengths as well.
India has a very high bar as far as expectations and as such, women are expected to return to work promptly after having children, which ironically is not the case in some Western countries where women’s roles as mothers are given more time off work. Having immigrated from Europe to America I can appreciate Mona’s experience and her determination to prove herself, and the pressures that cause. I am a believer we need to deemphasize the adage ‘work at any cost’ but I respect that with increasing competition, if you can’t, someone else will, and how much pressure that puts on women especially, when having children, to return to work. A ROLL OF THE DICE also brings up the issues for women, where their work is ‘a second skin’ and how you navigate success with having a family.
A ROLL OF THE DICE also examines the very private musings women have about childbirth and being mothers. The cultural emphasis in all countries, of ‘perfection’ and fitting in immediately, isn’t what many women experience, and yet little is said about C-Section pain, or the difficulty of adjusting to not working or how many do not feel ‘rested’ by being told to rest. These intensely female experiences are maligned because we want to show ‘the best of’ which only puts pressure on women to conform to an ideal that may actually, not exist.
If I were to take the stories of motherhood and adjustment alone, they would stand as a powerful modern testimony to the hypocrisy surrounding the birthing experience and motherhood, and the pressure we put on young women to confirm to often inaccurate ideals. My own mother had a very similar experience, unable to breastfeed, loathing of the traditional tropes of motherhood and its generalized expectations, I am acutely aware this is a layer of pressure women could well do without, and one many of us do not have the courage to talk about. If I had to point to one theme, I found most powerful in A ROLL OF THE DICE it would be this ability Mona Dash has, for drawing the reader in and teaching them truths few of us have the courage to speak.
The vital information that Mona’s parents lost a son at six months of age, did nothing to help doctors discover what was wrong with little Akshyat, and the story of how hard they struggled to find an answer, is testimony to the challenges of rare illnesses and the inability of the medical profession to have accurate answers to many of these phenomena and trying to put pieces of a huge puzzle together to reach a diagnosis. Being told your child is ‘not normal’ and being shamed for how you treated the illness, is something many parents experience even to this day. Mona describes the fury of parents trying to find the right care in a huge country, with multiple bewildering options and then a second chapter in a foreign country, battling anew.
I was deeply moved by the entirety of the book, and the language Mona Dash possesses in abundance to describe intelligently, the fierce unyielding devastation; “Others said, ‘I could never cope with such pain,’ as if one had a choice.” So many lines will stay with me long after this book, this is a book I will recommend many to read, they may wonder why me? But after reading, they too will recommend. “Have you held a baby, dead, in your arms? Do you know how suddenly, in just a few minutes, the soft dimpled limbs become dimensionless and rigid? The breath is sucked out and a woodenness nests in the body. What does lifeless truly mean, do you know?” There are numerous pockets of incredible wisdom and insight throughout this book you’ll never erase, a penetration through suffering, to the very dermis of what life is truly about; “Employers like to see drive and ambition, whether fueled by despair or not.”
Being told a bone marrow transplant in another country is the only solution, and trying to raise $100,000 for this procedure, is the painful reality of many parents of babies with SCIDs. I want to walk you through the rest of this unforgettable story, including infertility and a fight with endometriosis, but that’s not the purpose here. My purpose is to ask you to read this book yourself, because from it, you will gain both humanity and humility and you will be glad for any health you have, and aware, very aware, of how precious health is. How if you do one thing, it should be to not give up, or succumb to despair, but to recognize, within a broken system, there is hope. And within you, there is fortitude for facing what cannot be faced.
“The constant communication with complete strangers, the hope and the goodwill I received from people I had never seen, nor would ever see, shaped my days. That interaction helped me survive.”
“It’s not for us to spurn this life we have been given. Until this soul himself wants to go, until then, we will do our best.”
September 1, 2019
A Roll of the Dice- A Story of Love Loss and Genetics by Mona Dash - 2019
Mona Dash lost her first child, a boy, to a very rare genetic disease passed from mothers to sons, SCID (severe combined immunodeficiency). Spanning ten years we follow her through the horrowing efforts to find out why her healthy at first baby son is fading. Her descriptions of the last hours of her son will impact deeply any caring person. She is wounded when the hospital personnel told her the boy will be buried, not cremated as is customary for those of her faith, Hindus. She was told babies under one are buried. Of course Mona tries to understand what happened. She had very carefully observed proper procedures, all her check ups had been positive. Why was her baby taken? As the memoir opens she learns the problem.
In India,where the memoir begins, the genetic disease is so uncommon, maybe one male baby out of 700,000, that physicians there are not able to initially recognize her first baby's condition in time to treat him. She and her husband went from one doctor to another. Finally they were referred to a doctor in Kalcata who discovered she was a genetic bearer of a disease that would quite possibly take the life of any male child in just a few years at most. Th"e doctor told her the best hope for her to have a son free of this disease was to move to London where there were physicians and facilities that could help her. In order to have any hope of having a healthy son she would need expert specialized neo-natal care and very careful monitoring while pregnant. Some doctors did advise her it might be best to abort the birth of any boys but she refused this as did her very supportive husband.
Making the decision to move to London was not easy. She and her husband both had good jobs and family ties. We go along as they relocate in London and are soon employed and settle into life in London. When Mona once again becomes pregnant she is advised to go to Great Ormond Street Hospital where SCID (Severe Combined Immuno-deficiency) is recognised and understood. It is determined the baby is a boy, meaning about a fifty percent change he will have SCID. Mona is very much an internet connected person and she joins support groups for mothers with her issue. I was moved to see she developed real and long lasting relationships with other mothers, from all over the world.
As the pregnancy proceeds we learn about treatment procedures in considerable detail. All of the hospital personnel and her doctors are very caring. Her parents come from India to help. Her new employer resents her time off from work. We see how her religious and spiritual faith helps sustain her. Just as she was, with everyday we worry more and are more concerned. I admired her husband for his dedication.
Roll of the Dice- A Story of Love Loss and Genetics is more than just an edifying account of a difficult pregnancy. It is a story of family love, marital love, about adjusting to a life in a new city. We learn about medical practitioners in India and London. I found it very honest, I wanted so much for Mona to realize her dreams.
Included is an by INTRODUCTION BY PROFESSOR BOBBY GASPAR,M.D., from Great Ormand Street Hospital in London. He helps us with medical details about SCID.
As I read this powerful memoir I could not help but think of the Russian Czar Nicholas and his wife Alexandria trying to cope with the hemophilia of their son. I think they would greatly admire Mona Dash.
I highly recommend her memoir.
Mona Dash lost her first child, a boy, to a very rare genetic disease passed from mothers to sons, SCID (severe combined immunodeficiency). Spanning ten years we follow her through the horrowing efforts to find out why her healthy at first baby son is fading. Her descriptions of the last hours of her son will impact deeply any caring person. She is wounded when the hospital personnel told her the boy will be buried, not cremated as is customary for those of her faith, Hindus. She was told babies under one are buried. Of course Mona tries to understand what happened. She had very carefully observed proper procedures, all her check ups had been positive. Why was her baby taken? As the memoir opens she learns the problem.
In India,where the memoir begins, the genetic disease is so uncommon, maybe one male baby out of 700,000, that physicians there are not able to initially recognize her first baby's condition in time to treat him. She and her husband went from one doctor to another. Finally they were referred to a doctor in Kalcata who discovered she was a genetic bearer of a disease that would quite possibly take the life of any male child in just a few years at most. Th"e doctor told her the best hope for her to have a son free of this disease was to move to London where there were physicians and facilities that could help her. In order to have any hope of having a healthy son she would need expert specialized neo-natal care and very careful monitoring while pregnant. Some doctors did advise her it might be best to abort the birth of any boys but she refused this as did her very supportive husband.
Making the decision to move to London was not easy. She and her husband both had good jobs and family ties. We go along as they relocate in London and are soon employed and settle into life in London. When Mona once again becomes pregnant she is advised to go to Great Ormond Street Hospital where SCID (Severe Combined Immuno-deficiency) is recognised and understood. It is determined the baby is a boy, meaning about a fifty percent change he will have SCID. Mona is very much an internet connected person and she joins support groups for mothers with her issue. I was moved to see she developed real and long lasting relationships with other mothers, from all over the world.
As the pregnancy proceeds we learn about treatment procedures in considerable detail. All of the hospital personnel and her doctors are very caring. Her parents come from India to help. Her new employer resents her time off from work. We see how her religious and spiritual faith helps sustain her. Just as she was, with everyday we worry more and are more concerned. I admired her husband for his dedication.
Roll of the Dice- A Story of Love Loss and Genetics is more than just an edifying account of a difficult pregnancy. It is a story of family love, marital love, about adjusting to a life in a new city. We learn about medical practitioners in India and London. I found it very honest, I wanted so much for Mona to realize her dreams.
Included is an by INTRODUCTION BY PROFESSOR BOBBY GASPAR,M.D., from Great Ormand Street Hospital in London. He helps us with medical details about SCID.
As I read this powerful memoir I could not help but think of the Russian Czar Nicholas and his wife Alexandria trying to cope with the hemophilia of their son. I think they would greatly admire Mona Dash.
I highly recommend her memoir.
May 6, 2019
A Roll Of The Dice is a recollection of a ten-year journey by Mona into the world of genetic medicine starting from the beautiful plains of India, to the bustling city of London with myriads of fear, loss, grief, anger, love and patience which culminates into a test of faith and motherhood.
Told from the author’s point of view, the opening section lurches the reader straight into a tale of trepidation and auras of death. It explicitly narrates the life of an Indian woman, in this case, Mona, which revolves around a budding career and a blissful marriage until she decides to add a baby to her schedule and life humbles her with a child with SCID, a rare genetic disorder characterized by disturbed development of T and B cells. The outcome of this episode plunges her into a tunnel of protracted fear of conception, the possibility of having an XY child and the urgent need to flee a homeland that then, was no place for a mother who is a threat to her own progeny.
Thematically, the book explores medicine to a greater extent, then migration, family love, support, beliefs and travel. It evokes bouts of bittersweet emotions in no particular order like the aftermath of having little innocents that come with pains, the joy of having dual citizenship, the relief found in family and friendship and the assurance that comes with spiritual devotion.
The writing style, the vivid description of places, and in-depth presentation of medical practices in this book reflect an uninhibited rendering of a personal experience without half-truths, which leaves nothing to doubt and this, I found remarkable and courageous.
Some medical jargon such as CVS, bubble babies, SCID, deepest pool, PPROM stuck with me. Some lines like ‘a movie style fainting fit…,’ ‘around you the entire world is producing babies…,’ made me smile. Visiting of temples and lighting of candles in Notre Dame, made me wonder how far desperation can take one; and towards the end, I wished I could read more about Mister Smith and Dr. Thomas.
I wouldn’t stop at recommending this book to women battling with infertility, mothers of SCID children or those battling other genetic disorders but also to everyone because there are things we can’t ignore: the truth about the universe, inadequate health facilities in most countries, the need to acknowledge peoples’ pains and be grateful for one thing, being normal.
Told from the author’s point of view, the opening section lurches the reader straight into a tale of trepidation and auras of death. It explicitly narrates the life of an Indian woman, in this case, Mona, which revolves around a budding career and a blissful marriage until she decides to add a baby to her schedule and life humbles her with a child with SCID, a rare genetic disorder characterized by disturbed development of T and B cells. The outcome of this episode plunges her into a tunnel of protracted fear of conception, the possibility of having an XY child and the urgent need to flee a homeland that then, was no place for a mother who is a threat to her own progeny.
Thematically, the book explores medicine to a greater extent, then migration, family love, support, beliefs and travel. It evokes bouts of bittersweet emotions in no particular order like the aftermath of having little innocents that come with pains, the joy of having dual citizenship, the relief found in family and friendship and the assurance that comes with spiritual devotion.
The writing style, the vivid description of places, and in-depth presentation of medical practices in this book reflect an uninhibited rendering of a personal experience without half-truths, which leaves nothing to doubt and this, I found remarkable and courageous.
Some medical jargon such as CVS, bubble babies, SCID, deepest pool, PPROM stuck with me. Some lines like ‘a movie style fainting fit…,’ ‘around you the entire world is producing babies…,’ made me smile. Visiting of temples and lighting of candles in Notre Dame, made me wonder how far desperation can take one; and towards the end, I wished I could read more about Mister Smith and Dr. Thomas.
I wouldn’t stop at recommending this book to women battling with infertility, mothers of SCID children or those battling other genetic disorders but also to everyone because there are things we can’t ignore: the truth about the universe, inadequate health facilities in most countries, the need to acknowledge peoples’ pains and be grateful for one thing, being normal.
November 21, 2021
An amazing story of a mother's strength and determination while facing so much suffering over health and genetics issues.
May 19, 2019
"Truth is stranger than fiction", well it has to be, for ordinary mortals cannot compete with a pen that is divine.
Here is the true story of a mother, hinging her hopes on science and miracles, fighting against all odds, to hold her baby in her arms, after losing her first-born.
The odds are too many, and none of them in her control. SCID that she's carrying in her genes, and may pass on to her unborn child, and each roll of her dice is more challenging than her previous one. She fights against all the unforeseen odds with the support of her family, friends and inner strength.
There is a rare element of detachment in her grief. The reader moves along with her, saddened by the unfolding of events, yet, gaining inspiration from her courage and faith.
Her ability to smile at life, with her humorous observations, in testing times, is really touching.
At the end, "A Roll Of The Dice" makes us believe that miracles are within us. It needs faith and resilience to bring them out.
Here is the true story of a mother, hinging her hopes on science and miracles, fighting against all odds, to hold her baby in her arms, after losing her first-born.
The odds are too many, and none of them in her control. SCID that she's carrying in her genes, and may pass on to her unborn child, and each roll of her dice is more challenging than her previous one. She fights against all the unforeseen odds with the support of her family, friends and inner strength.
There is a rare element of detachment in her grief. The reader moves along with her, saddened by the unfolding of events, yet, gaining inspiration from her courage and faith.
Her ability to smile at life, with her humorous observations, in testing times, is really touching.
At the end, "A Roll Of The Dice" makes us believe that miracles are within us. It needs faith and resilience to bring them out.
May 16, 2019
I read this memoir in probably two or three sittings I just couldn't put it down because I wanted to be there with Mona, wanting to hold her hand while she reflected on her difficult journey to motherhood. I wasn't aware of SCID and this memoir talked about the condition with a scientific approach as well as an emotional one. There are such difficult subjects to write about - the loss of one's child being the most painful, I think, and Mona has talked about her experience with sensitivity and not sentimentality. A must read.
June 3, 2019
This is such a moving story. The author is skilled in writing her tale in a way that makes you feel you are living through it with her. She has been through so much, I wondered so many times in the reading of it, how she ever kept going. I don’t think I could have.
As a doctor, I wasn’t sure if this would feel like a busman’s holiday. I work with people suffering as the author did every day. But every day, I am amazed at the triumph of the human spirit in my patients. This story takes me deeper, to the anatomy of that spirit. It is harrowing, yet hopeful. A must read.
As a doctor, I wasn’t sure if this would feel like a busman’s holiday. I work with people suffering as the author did every day. But every day, I am amazed at the triumph of the human spirit in my patients. This story takes me deeper, to the anatomy of that spirit. It is harrowing, yet hopeful. A must read.
November 2, 2019
A heart wrenching account of love and loss while meandering through the medical systems of two countries on two different continents. The personal details of how life is treated by different doctors and the anguish of making personal decisions with the knowledge that the life being brought forth may be saddled with formidable challenges. Ms Dash holds your attention throughout this intimately personal account of her unwanted knowledge of a disease that most of us only superficially had heard about through the 'bubble boy'. I couldn't put it down once I started reading it. Thank you Mona for having the courage to share your journey with us.
June 20, 2022
I couldn’t put it down! It is a quite extraordinary account of the author's story and I found myself in awe of her resilience as a mother, and of her ability to capture in words the long and traumatic journey she's been on. The science is extraordinary as well. To find a book which brings together the personal, scientific, and international aspects of medical progress is rare and valuable. Thoroughly recommended.
Displaying 1 - 9 of 9 reviews