Authored By: Ethan Harris
Reviewed By: Dr. Serenati
Psychological Effects of Hallermann-Streiff
Imagine you go from “looking normal” one day, to being physically distorted the next due to a traumatic car accident. Months of physical therapy helps replenish your strength, and plastic surgery helps restore your features to an extent. However, you never quite look the same again. Yes, you can go seek psychiatric mentoring to feel comfortable in your own skin once more, but the many strangers on the street you see will stare longer than is appropriate, little kids will point fingers, and some will give you that pitying look. What do you do—stay in your house forever? Be constantly self aware of yourself, crippling your full potential out of life? Well, welcome to the life of a person with Hallermann-Streiff syndrome, a disease which forces those who possess it to have these lingering doubts every day. Chronic illness such as depression, anxiety, and overt self consciousness can prevalently cloud their thoughts and general health.
Hallermann-Streiff syndrome is distinct in that it causes people to have deformed craniums, meager hair, eye abnormalities, a thin nose, irregular tooth maturity, and short statures. These are physical distortions, but their mental capacity (intelligence) is unaffected by the syndrome. However, certain mental illnesses, which nearly anyone can endure, are extremely more likely in comparison. An illness in this context refers to an individual’s perception of their symptoms and how they and their families respond to these symptoms (27). With that concept defined, it is important to understand the amount of varying challenges that those with disabilities face. Hallermann-Streiff can threaten someone’s life and physical well-being; an inner doubt that struggles for independence, privacy, and control, as well as a lack of self-concept and fulfillment of expected roles (28-29).
Those who suffer from physical disabilities, such as Hallermann-Streiff, learn to cope with their condition in several different ways. The first is denial, in which the person avoids advised treatment, ultimately neglecting their condition, which helps keep excessive anxiety at bay. Another coping method is called regression, meaning the person becomes even more dependent upon others, resulting in their lack of want for independence in life. Another is compensation, in which a person tries to better themselves in one aspect due to their lack of fulfillment in another aspect. This can lead to bad habits such as promiscuity (to compensate for their physical distortions) in order to feel “normal.” Many ways of coping for some includes grief, enabling the person to feel sorry for themselves to the extent that a pathological grief reaction to most situations in life takes root in a person’s mind. This usually yields depression, helplessness, and discouragement that are pathways towards self destructive habits such as drugs to try and feel adequate (30-32).
Those with physical disabilities often have several mental issues, which can also affect those closest to them: their families. In fact, family members may cope the same way the individual does, leading to a domino effect of depression, anxiety, anger, and self consciousness unless the family makes adjustments in order to adapt. They need to advocate for the person with chronic illness by being present at doctor’s appointments, asking questions, and being proactive towards service agencies (for example, someone blind using a seeing dog service). As a result, it is vitally important that family members provide emotional support, physical care, supervision, transportation, etc. A person facing these mental illnesses as a result of traumatic physical disabilities needs that support. The family needs to utilize their new roles and plans surrounding this change (33-41).
In order for the person to reach his or her full quality in life, they, as well as their families need to make a decisive advancement to not only cope, but to overcome any debilitating mental illnesses in order to feel as normal as they actually are. Though people’s opinions on what defines a quality life differ, it is likely that most people have a desire to be satisfied with themselves; confident that they are not being hindered by such physical impairments. Most people want to succeed in what they desire the most.
Yet, coping with physical handicaps in order to attain one’s desires also plays a role when dealing with people outside of the family. Many find themselves inadequate enough for emotionally satisfying experiences. Many people are prone to inflict prejudice, stereotyping, or awkward staring upon those with disabilities whether it is deliberate or inadvertently done. This can seriously ignite or reinforce mental illness in those with impairments, causing them to refrain from interacting in a normal social environment (46). In summary, the author writes in Medical and Psychosocial Aspects of Chronic Illness and Disability:
The effects of chronic illness and disability are far reaching; they include psychological, social, and vocational effects, and changes and adjustments in both general lifestyle and activities of daily living… The extent of which the condition is handicapping depends to a great extent on indivual’s perception of the condition, the environment, and the reactions of family, friends, and society in general. Thus understanding and working effectively with individuals who have chronic illness or disability requires a broad outlook that goes beyond medical diagnosis. The most important factor is the individual’s ability to function with the condition within his or her environment and all areas of his or her life (20).
The above reasons are why my partners and I want to raise awareness for Hallermann-Streiff, and all those who suffer from physical disabilities, whether it is from tragic accidents or they were born with the disease. These individuals deserve not only recognition, but respect for everything that they have to endure. Our group hopes to raise awareness so that other people might be more educated with these conditions, how they’re behaviors are affected due to society, and how we can all live in a better, less judgmental world.
Through this group’s avocations, we hope to also provide a framework so that those with similar illness/physical discrepancies can connect with one another. This will enable one another to offer help both emotionally and socially. We plan for our website to be a meeting point so that all who come can understand that there are others who dealing with the same issues. Depression, anxiety, and fear are all temporary, but friendships and stability with one another can last a lifetime.
In conclusion, Hallermann-Streiff (as well as other physical impairments that people possess) needs to be seen in a light that consists of understanding and acceptance. Through our workings as a group, we hope that everyone who has been physically handicapped by illness or
accident can connect with one another and provide a social web of personal experience. We also hope that the general public can embrace these people, truly understanding that they face many mental illnesses as a result of the public’s attitude and perception of them.
Works Cited:
Falvo, Donna R. Medical and Psychosocial Aspects of Chronic Illness and Disability. Third ed.
Sudbury: Jones and Bartlett, 2005. Print.
Reviewed By: Dr. Serenati
Psychological Effects of Hallermann-Streiff
Imagine you go from “looking normal” one day, to being physically distorted the next due to a traumatic car accident. Months of physical therapy helps replenish your strength, and plastic surgery helps restore your features to an extent. However, you never quite look the same again. Yes, you can go seek psychiatric mentoring to feel comfortable in your own skin once more, but the many strangers on the street you see will stare longer than is appropriate, little kids will point fingers, and some will give you that pitying look. What do you do—stay in your house forever? Be constantly self aware of yourself, crippling your full potential out of life? Well, welcome to the life of a person with Hallermann-Streiff syndrome, a disease which forces those who possess it to have these lingering doubts every day. Chronic illness such as depression, anxiety, and overt self consciousness can prevalently cloud their thoughts and general health.
Hallermann-Streiff syndrome is distinct in that it causes people to have deformed craniums, meager hair, eye abnormalities, a thin nose, irregular tooth maturity, and short statures. These are physical distortions, but their mental capacity (intelligence) is unaffected by the syndrome. However, certain mental illnesses, which nearly anyone can endure, are extremely more likely in comparison. An illness in this context refers to an individual’s perception of their symptoms and how they and their families respond to these symptoms (27). With that concept defined, it is important to understand the amount of varying challenges that those with disabilities face. Hallermann-Streiff can threaten someone’s life and physical well-being; an inner doubt that struggles for independence, privacy, and control, as well as a lack of self-concept and fulfillment of expected roles (28-29).
Those who suffer from physical disabilities, such as Hallermann-Streiff, learn to cope with their condition in several different ways. The first is denial, in which the person avoids advised treatment, ultimately neglecting their condition, which helps keep excessive anxiety at bay. Another coping method is called regression, meaning the person becomes even more dependent upon others, resulting in their lack of want for independence in life. Another is compensation, in which a person tries to better themselves in one aspect due to their lack of fulfillment in another aspect. This can lead to bad habits such as promiscuity (to compensate for their physical distortions) in order to feel “normal.” Many ways of coping for some includes grief, enabling the person to feel sorry for themselves to the extent that a pathological grief reaction to most situations in life takes root in a person’s mind. This usually yields depression, helplessness, and discouragement that are pathways towards self destructive habits such as drugs to try and feel adequate (30-32).
Those with physical disabilities often have several mental issues, which can also affect those closest to them: their families. In fact, family members may cope the same way the individual does, leading to a domino effect of depression, anxiety, anger, and self consciousness unless the family makes adjustments in order to adapt. They need to advocate for the person with chronic illness by being present at doctor’s appointments, asking questions, and being proactive towards service agencies (for example, someone blind using a seeing dog service). As a result, it is vitally important that family members provide emotional support, physical care, supervision, transportation, etc. A person facing these mental illnesses as a result of traumatic physical disabilities needs that support. The family needs to utilize their new roles and plans surrounding this change (33-41).
In order for the person to reach his or her full quality in life, they, as well as their families need to make a decisive advancement to not only cope, but to overcome any debilitating mental illnesses in order to feel as normal as they actually are. Though people’s opinions on what defines a quality life differ, it is likely that most people have a desire to be satisfied with themselves; confident that they are not being hindered by such physical impairments. Most people want to succeed in what they desire the most.
Yet, coping with physical handicaps in order to attain one’s desires also plays a role when dealing with people outside of the family. Many find themselves inadequate enough for emotionally satisfying experiences. Many people are prone to inflict prejudice, stereotyping, or awkward staring upon those with disabilities whether it is deliberate or inadvertently done. This can seriously ignite or reinforce mental illness in those with impairments, causing them to refrain from interacting in a normal social environment (46). In summary, the author writes in Medical and Psychosocial Aspects of Chronic Illness and Disability:
The effects of chronic illness and disability are far reaching; they include psychological, social, and vocational effects, and changes and adjustments in both general lifestyle and activities of daily living… The extent of which the condition is handicapping depends to a great extent on indivual’s perception of the condition, the environment, and the reactions of family, friends, and society in general. Thus understanding and working effectively with individuals who have chronic illness or disability requires a broad outlook that goes beyond medical diagnosis. The most important factor is the individual’s ability to function with the condition within his or her environment and all areas of his or her life (20).
The above reasons are why my partners and I want to raise awareness for Hallermann-Streiff, and all those who suffer from physical disabilities, whether it is from tragic accidents or they were born with the disease. These individuals deserve not only recognition, but respect for everything that they have to endure. Our group hopes to raise awareness so that other people might be more educated with these conditions, how they’re behaviors are affected due to society, and how we can all live in a better, less judgmental world.
Through this group’s avocations, we hope to also provide a framework so that those with similar illness/physical discrepancies can connect with one another. This will enable one another to offer help both emotionally and socially. We plan for our website to be a meeting point so that all who come can understand that there are others who dealing with the same issues. Depression, anxiety, and fear are all temporary, but friendships and stability with one another can last a lifetime.
In conclusion, Hallermann-Streiff (as well as other physical impairments that people possess) needs to be seen in a light that consists of understanding and acceptance. Through our workings as a group, we hope that everyone who has been physically handicapped by illness or
accident can connect with one another and provide a social web of personal experience. We also hope that the general public can embrace these people, truly understanding that they face many mental illnesses as a result of the public’s attitude and perception of them.
Works Cited:
Falvo, Donna R. Medical and Psychosocial Aspects of Chronic Illness and Disability. Third ed.
Sudbury: Jones and Bartlett, 2005. Print.
Authored By: May Cole
Reviewed By: Dr. Serenati
The Difficulties Hallermann-Streiff Syndrome Inflicts
Hallermann-Streiff Syndrome is one of the most uncommon conditions in the world, with only 150 cases being reported in medical literature. Though this genetic disorder caused by a mutation is highly unusual, there are several case studies about Hallermann-Streiff Syndrome, including ones from the Erciyes Medical Journal, Dovepress, and Korean Journal of Pediatrics. These three case studies prove that Hallermann-Streiff Syndrome can cause problems for nearly every person with this condition, as well as their families, friends, and loved ones, by demonstrating the hindrance to a normal life placed on the patients from physical and emotional difficulties.
Hallermann-Streiff is a congenital disorder that affects growth and development, resulting in an odd appearance. It was named for Wilhelm Hallermann and Enrico Streiff who were two of the very first investigators who had reported cases of the syndrome. It is also referred to as Francois Dyscephaly Syndrome, HSS, and Oculomandibulofacial syndrome. It’s a subdivision of Ectodermal Dyplasias. The first case study titled “A Case Report: Hallermann-Streiff Syndrome” by İbrahim Hakan Bucak, Gökhan Tümgör, Perihan Yasemen Canöz, Göksel Leblebisatan, and Mehmet Turgut, published in the Erciyes Medical Journal discusses the case of a 7-month-old baby who was admitted to a clinic because of a fever and cough. He had an unusually small body, “…a prominent nose, depressed nasal root, high-arched palate, low-set ears, and small mouth…”(Erciyes 130). The second case study titled “Hallermann-Streiff Syndrome with Sever Bilateral Enophthalmos and Radilogical Evidence of Silent Brain Syndrome: A New Congenital Silent Brain Syndrome?” by Paolo Nucci, Carlo de Conciliis, Matteo Sacchi, and Massimiliano Serafino, published in DovePress had similar findings. Their four-year-old patient had “abnormalities of the skull with hypoplastic mandible, micrognathia, frontal bossing; a beak-shaped nose; abnormalities of the eye, with microblepharon, flat orbits, and enophthalmos; atrophy of the skin over the nose and the eyelids associated with hypotrichosis of the scalp; and dental anomalies including malocclusion, caries, and malformed teeth”(DovePress 908). Finally, the third case study, titled, “A Case of Hallermann-Streiff Syndrome with Aphakia” by Myung Chul Lee, Jeong Choi, and Jin Wha Jung, published in the Korean Jornal of Pediatrics introduces a five-year-old girl with a “growth disorder”, “pointed nose” and “thin hair”(Korean Journal 646). What all three of these case studies are describing is that the majority of people with Hallermann-Streiff Syndrome have a very small stature, bird-like features, poor or defective eyes, a small mouth with dental problems, and thin hair. The case studies are each set up to be completely scientific. They state at the end that there are no conflicts of interest, which makes the sources credible. In each case study, the patient being studied requires some type of surgery and very intense care.
This condition obviously imposes several difficulties on the people who have it. Physically, they have trouble with vision, caused by clouding of the lenses of the eyes, resulting in many surgeries, such as cornea transplants, etc. There is also a problem with teeth being underdeveloped, making it difficult to eat and talk. Respiratory issues are found to be a major problem as mentioned in DovePress, “Early death due to respiratory complications is known to occur in these patients”(DovePress 909). Sleep Apnea is common in these patients as well. Although physical problems are prominent, one of the main issues for people with Hallermann-Streiff, especially children, is the emotional pain they have to go through. Their small size and odd-looking features can attract tormentors and peculiar looks in public. This can result in severe depression and social anxiety. Because Hallermann-Streiff Syndrome is so rare, it is difficult for a person with this condition or their families to find help or even someone who understands exactly what they are going through. It can be incredibly frustrating for patients and families, as well as their doctors, to deal with this condition and solve the many problems it inflicts.
One thing mentioned in two of the three case studies was the idea of being watched carefully by doctors. DovePress, who follows the four-year-old, says, “The complex problems of cases with the rarely seen Hallermann-Streiff syndrome necessitate multiple follow-ups of these patients in an experienced health center.”(Erciyes 132). Korean Journal, who follows the five-year-old, says, “In the management of a patient with this syndrome, one should pay special attention to ophthalmologic, dental and upper respiratory problems.” (Korean Journal 649). This can be very time consuming and expensive for patients and their families. It could require several trips to the doctor and several months off of school or work necessary for surgery. The surgeries and doctor visits can be costly, often requiring x-rays and various texts. Sometimes special equipment, such as a breathing machine, is required, adding to the cost. It can be difficult to find a doctor skilled enough and dedicated enough to work with a person with Hallermann-Streiff Syndrome. The purpose of these three case studies is to make an effort to the understanding of Hallermann-Streiff Syndrome so that it can be a little easier to help patients with this condition. The more case studies there are about the condition, the closer doctors can get to finding solutions, such as successful surgeries and treatments, which would make it physically easier for patients with Hallermann-Streiff Syndrome. The case studies can also help therapists research the condition in an effort to better console patients and help them though it.
Personally, my connection to Hallermann-Streiff Syndrome is my uncle Steve. Steve was born with Hallermann-Streiff and lived with it for 61 years. He was unfortunately killed in a car accident in the summer of 2014. In the time he was alive, however, I grew very close to him. He would live at my house 2-4 days a week. Growing up, I never knew he had Hallermann-Streiff Syndrome. It wasn’t until I was about eight years old I began to notice his condition. I became aware when we were in public that people would stare at him. I always thought of Steve as a playmate and someone to look up to, his condition invisible to me. As I got older, it became more obvious to me how Hallermann-Streiff Syndrome affected him. I witnessed Steve having several eye surgeries and did my best to help him heal through it. The older he got, however, the more visually impaired he became. It was becoming unsafe for him to take the bus to downtown Denver, one of his favorite places. My family urged him to be more careful, but, being the free spirit he was, he continued to go. Despite his condition, Steve was one of the smartest and strongest people I knew. He used to go to the gym daily and loved to run. He also loved to study history. Steve’s obituary read, “A uniquely special person, Steve made ultimate use of his gifts and was an inspiration to other people who has physical handicaps”. My uncle Steve made it impeccably clear to me that the Hallermann-Streiff Syndrome does not have to stop anyone from living their life and being who they are.
The Internet has done wonders for helping people. It can connect people from all around the world and provide various resources for multiple conditions. However, one of the problems for Hallermann-Streiff Syndrome is that, other than these medical journals, there is not much information about it. Ask any doctor about it, and chances are, they have never heard of it before. This poses many problems for people living with Hallermann-Streiff Syndrome. RareDiseases.org, as well as several other websites, can only offer a few resources for finding help. The primary resource is the National Foundation for Ectodermal Dyplasias. Ectodermal Dyplasias is “… a group of heritable disorders causing the hair, teeth, nails and glands to develop and function abnormally”(NFED), which includes Hallermann-Streiff Syndrome. Their website has the options to donate and volunteer, as well as offers information and treatment ideas. While this foundation is incredibly helpful, it does not provide specific help just for patients living with Hallermann-Streiff Syndrome. Other resources include the National Eye Institute and Craniofacial Foundation of America. These organizations, their websites, and their resources can help to aid people living with Hallermann-Streiff Syndrome, but again does not directly address the condition or provide the best solutions.
My goal through developing a blog and social media pages is to reach as many people living with Hallermann-Streiff Syndrome and their families as possible in an effort to help support them. Not only do I intend to reach people with the condition, but other people who have never heard of it before. The more people who are aware of this condition results in more understanding and help for the people living with this condition. The general public should never have to have questions such as, “What’s wrong with that little girls face?” or “Is that child dying?”. Equality and understanding is necessary for a person living with Hallermann-Streiff Syndrome to live a healthy, successful, and happy life. Although rare, this condition is common enough that it requires care and support from the community. I can only imagine how my uncle Steve felt growing up: strange, alone, and different. I don’t want any one else to feel that way simply because they have Hallermann-Streiff Syndrome. I want each and every one of the people living with this condition to know that it does not have to hinder them from reaching their goals and living life to the fullest. The three case studies prove that Hallermann-Steiff Syndrome imposes several problems, both physically an emotionally, on people living with it. Something needs to be done to aid people with this condition and raise awareness in the general public.
Works Cited
Bucak, Ibrahim Hakan, Gokhan Tumgor, Perihan Yasemen Canoz, Goksel Leblebisatan, and Mehmet Turgut. "A Case Report: Hallermann-Streiff Syndrome." Erciyes Medical Journal (2014): 130-32. Erciyes University School of Medicine, 28 Sept. 2013. Web. 15 Feb. 2015. <http://www.erciyesmedj.com/sayilar/246/buyuk/130-2.pdf>.
Lee, Myung Chul, Im Jeong Choi, and Jin Wha Jung. "A Case of Hallermann-Streiff Syndrome with Aphakia." Korean Journal of Pediatrics 51 (2008): 646-49. 6 Nov. 2008. Web. 18 Nov. 2015. <http://synapse.koreamed.org/Synapse/Data/PDFData/0052KJP/kjp- 51- 646.pdf>.
"National Foundation for Ectodermal Dysplasias." NFED. N.p., n.d. Web. 18 Feb. 2015. <http://nfed.org/index.php/about_ed/types_of_ectodermal_dysplasias>
Nucci, Paolo, Carlo De Conciliis, Matteo Sacchi, and Massimiliano Serafino. "Hallermann–
Streiff Syndrome with Severe Bilateral Enophthalmos and Radiological Evidence of Silent Brain Syndrome: A New Congenital Silent Brain Syndrome?" DovePress (2011): 907-11. PDF.
Authored By: Tsubasa Yoshizaki
Reviewed By: Dr. Serenati
Joshua, a Precious Gift fromGod: Living Proof that Life is Fragile
Most parents expect that their children will be born free from afflictions and disabilities – so what happens when they are not? These are some of the questions that Michelle McCaleb addresses in her book Joshua, a Precious Gift from God. The book provides emotional insight into the life of a mother whose child was born with an extremely rare condition called Hallermann - Streiff syndrome. Since the condition is extremely rare, very few books provide emotional analysis on Hallermann - Streiff syndrome. Most books talk about the factual aspects, but not the emotional components of the disease. Joshua, a Precious Gift from God, is different – it is a book that reveals what it is like to love a child with Hallermann - Streiff syndrome, and what it is like to lose that child. Joshua, a Precious Gift from God, is an emotionally valuable resource for other parents experiencing the difficulties of dealing with the ups and downs of having a child with an extremely rare condition.
Despite his disability, Joshua's mother Michelle loves him very much. Just because Joshua has a disability does not mean that he is not deserving of love as an individual and as a human being.
Even though Joshua has Hallermann - Streiff syndrome, he still reacts like a 'normal' child without Hallermann - Streiff syndrome would – with fear. This becomes apparent on page thirty four of the book, where McCaleb says, “When the nurse came in later to draw blood, Joshua would say, ‘Mommy I have to go potty.’ So I would take him into the bathroom and he would say, ‘No, I don't have to go.’ When I took him back to get his blood drawn, he would tell me once again that he had to go potty. This happened about three times, because he didn't want his blood drawn” (McCaleb, 34). McCaleb would not mind taking Joshua to the bathroom many times because she really loves him, and she knows he is scared.
Despite his physical abnormalities, Joshua is still a typical child in many ways. He feels fear, and is comforted by the presence of his mother, just like a child without a disability would be. Michelle McCaleb's writing style is easy to relate to because it's straightforward. She discusses her feelings about having a child with Hallermann – Streiffer syndrome in a very direct manner. For instance, she says, “Many people would come to see Joshua; they would say that he looked normal. This made me angry because I felt they weren't being truthful. I just wanted to face reality” (McCaleb, 15). This is one of the harsher realities of having a child who physically looks different than other children. People judge others who look physically different from themselves. Joshua did not look normal on the outside, even though he was normal on the inside. People were denying this fact in order to make Joshua's mother, Michelle McCaleb, feel like she was the mother of a normal child, but she knew that she was not. Her child was not the same as other children because of his physical and genetic differences. To deny this fact was to deny reality. Yet still, people like to McCaleb to make her feel like she was a 'normal' mother who fell into the majority, even though she was a minority.
However, the relationship that a parent has between a disabled child and a child who has been born free from disabilities is the same – parents love their children, whether they are disabled or not. This kind of love is one of the main themes that is discussed in Joshua, a Precious Gift from God. Michelle McCaleb openly talks about the difficulties of loving a sick child when talks about seeing her son Joshua after his surgery:
We walked into his room, as I saw him lying naked on the bed. He had all these different wires attached to him from the machines. As I stared at him in surprise he didn't look like my little Joshua. His little body had now become so swollen with fluid, and his eyelids were so swollen I could barely see his tiny little eyes. I asked the doctor about it and he said that it was normal for him to look like that . . . But it just didn't look like my little Joshua. (McCaleb, 38)
This paragraph is proof that loving a child with a disability is the same as loving a child without a disability. Love is still love, regardless of what physical shape it takes.
Many things about this book can teach people not to take things in their life for granted, such as, the health of their children. When a child is healthy, no one thinks about that child's health, because it is not a concern. When a child is sick, however, it is all that child's parents are ever able to think about. Joshua, a Precious Gift from God, talks about how stressful it is to watch her own son go through surgery: “I couldn't wait to see Joshua, to hold him and to talk to him again. After five hours passed the doctor came out and said that the surgery had been a success . . . We started to thank and praise God. I was so overwhelmed with joy. He had pulled through the surgery like a little warrior of God,” (McCaleb, 38). It implies how much she was worried about Joshua.
Joshua, a Precious Gift from God, could also potentially comfort parents who have children with rare conditions that people who have 'normal' children may not understand. The opposite, however, could also be true. Michelle McCaleb's book could also be beneficial to other parents who, before reading this book, may have difficulty understanding what parents who have children with Hallermann – Streiff are going through.
Since this book is not a scientific book but a memoir, Joshua, a Precious Gift from God, is not highly informative about Hallermann – Streiff syndrome. Due to the rarity of this syndrome, Hallermann – Streiff is a disease that many people are unfamiliar with. It is not easy to find information on the emotional effects information on Hallermann – Streiff syndrome, even though it is easy to find scientific information on it. This book could also be a potential resource for parents and others who are trying to cope with the loss (or the potential loss) of their child.
The dying process is an aspect that comes up in the book. The loss of any child is scary, and would be difficult for any parent to consider. No one is ever prepared to lose a child – it is impossible, even when the child is disabled. No parents want to lose their children. McCaleb openly talks about the fear of potentially losing Joshua, which could help parents who are in similar circumstances to cope with their feelings: “I felt that there really was a good possibility of Joshua dying, but I was really fighting my feelings . . . I looked back and think now maybe if I would have said something about my true feelings we could have prayed about it more. I also felt that with all the prayers and faith going forth, I thought talking about his dying might hinder faith,” (McCaleb, pg. 32). In this sense, Michelle McCaleb's book is based on her faith, and she often credits her faith to helping her get through difficult times, “I just kept of praying I didn't care who thought I was a fruit cake. I knew God was the only one who could help me. I knew that if the doctors and nurses had any knowledge to help me it came from the Lord,” (McCaleb, 6). Faith is McCaleb's way of dealing with the trials and tribulations of Joshua's Hallermann – Steiffer syndrome. Although faith and religion may not be effective for every person who is dealing with a problem similar to McCaleb's, it may help others know that they are not alone. It seems, according to McCaleb's text, that it is normal to experience many difficult feelings at one time when dealing with the ups and downs of having a child who is sick.
The text is also inspirational because it may give others hope for the future. Even when there is a chance that someone's child could die, there is also a chance that they could live. In Michelle McCaleb's case, she and her husband Danny love Joshua enough to try to improve his life through surgery, even though there is a chance that they are risking his life, and he could actually die. Yet they don't let that stop them from trying, even though it's difficult, as Michelle McCaleb says:
As I held him in my arms I was looking at all the other patients in the waiting room wondering what they were going to have done. I was feeling a lot of compassion for them, and wondering if their parents felt like Danny and I did . . . A nurse called Joshua's name. As she took him from me, I began to cry. It made me sick to hand my baby to her, knowing they were going to cut into his little chest. (McCaleb, 36)
Paragraphs like the one shown above may help other parents whose children may require surgery. They realize that they may have to take risks that they aren't comfortable taking for the sake of their child's wellbeing sometimes. Overall, the book is not necessarily informative when it comes to scientific information, and is more emotional in nature. However, Joshua, a Precious Gift from God is a very anecdotal book based on events that occurred while Joshua's parents were dealing with a child who had a diagnosis that was difficult to deal with. The book reads almost like a journal or a diary, and the style of writing used is fairly simple. This style is good, however, because it makes the book easy to identify with. It is also potentially the only, and most current, book that has been written from an emotional stand point instead of scientific perspective on Halleann – Stmreiff syndrome.
Even though there have not been any solutions to Hallerman – Streiff syndrome, people can first learn how to deal with this disease mentally. It is very important for people to know how to communicate with children who have Hallerman – Streiff syndrome. They might not look normal; however, they are normal inside.
Works Cited
McCaleb, Michelle. Joshua, a Precious Gift from God. N.p.: West Bow Pr, 2014. Print.