One day in the life of a preschooler fighting cystic fibrosis. Detail about the disease, how many states now screen for it at birth and what one family is doing to raise awareness and provide comfort
June 13, 2006 (Press Release) --
Cherokee, IA, June 5th, 2006- Children fighting the genetic killer Cystic Fibrosis are often kept apart so as not to share organisms which could be dangerous to other CF patients. Consequently they may not know any other children "like" them. One 4 year old with CF, Christa Lux, of NW Iowa and her older brother Devin began to question recently why the daily barrage of respiratory treatments, medicines and routines at their house. "Why does she get to stay up later and do treatments?" was the innocent question posed one night at bedtime. Until that point it had almost always gone without saying that the began each morning and ended each evening spending sometimes more than an hour completing Christa’s daily regimen of respiratory therapy.
Carrie, their mother, began to think about all the time devoted each day to keeping these CF symptoms at bay. “We strive to keep her airways clear and her digestive system functioning as well as possible. It's not an easy task, but as parents who love her dearly we make the choice to share this burden with her. It's something that she will have to keep up until science turns over a true cure.” states Carrie.
With a little help from a number of online contacts made with other parents across the country also fighting CF at their homes. A photograph book titled "Little Brave Ones" was compiled. The book was published in March and is beginning to pick up popularity with our little community of fighters. According to the national Cystic Fibrosis Foundation, this is a disease which plagues approximately 30,000 children and young adults across the country. Until recently, it was not uncommon for a child to struggle through childhood with repeated respiratory illnesses and poor growth and development, to find out later in life that they have cystic fibrosis. Many states here in the US now have included the CF screening on their list of genetic abnormalities checked for at birth. This is a very positive step because in many cases, so much more can be done in terms of prevention when the diagnosis is made early.
I hear positive comments on the book over and over from other CF afflicted families. Their children love to see the photos of other kids who use the same type of equipment and engage in the same daily challenges as themselves. It's very rewarding as the author to know that CF kiddos now feel like they truly fit in somewhere. The book is now available on Amazon.com.
A recently published picture book trails the Cystic Fibrosis Foundation’s recommendations to include a newborn screening for CF on all newborns.
June 12th, 2006, Cherokee, IA- It’s early morning at the Lux household, in the middle of the great green Midwest. Four year old Christa wakes up and begins her daily regimen of breathing treatments, chest physiotherapy and medications before heading to bible school with her big brother Devin. Christa is one of 30,000 plus children and young adults across the nation fighting the genetic killer cystic fibrosis.
Christa was diagnosed shortly after her birth and has fortunately been directed to life saving care at the University of Nebraska Medical Center in Omaha Nebraska. This care, her mother states, has been critical to her growth and development. It has become a well known fact in the CF community that patients diagnosed at birth can gain weight more easily and have better nutrition with early diagnosis. “Christa was eating all the time as an infant, but she was nutritionally starving because nothing was being digested by her body”, remembers Christa‘s mom, Carrie. CF essentially causes the tissues of the lungs, intestinal tract and pancreas to become thick and plugged, which hinders their functions. In the lungs this often leads to repeated infections, scarring and declining lung capacity. In the digestive tract, the problems occur because necessary enzymes from the pancreas which break down fats and proteins are blocked from their normal duties.
According to statistics available today on the Cystic Fibrosis Foundation’s website, just twenty-nine states in the US mandate the CF screen at birth. Of these twenty-nine, six of these require the test, but have yet to implement it as standard procedure with a newborn. “As a mother of a CF child, I strongly encourage every state’s legislature to consider this small addition to the already existing newborn panel. It could potentially save many families valuable time in their fight against the disease” adds Lux.
Carrie & her husband Kevin are committed to sharing the burden of this disease with Christa and do their best to keep her healthy and active. One recent challenge they have faced is the mountain of questions posed to them by their children about this disease. These inquisitions lead Carrie to believe that many CF children and their siblings, friends and family across the country must be wondering the same things. Children with CF are often kept at distance from one and other so as not to share potentially harmful germs. This is medically sound, but difficult when raising a child. CF children can feel isolated or alone in their fight, having no one “like themselves” to befriend. “It’s a simple truth of human nature that we all want to feel like we fit in” says Carrie, “this book will help CF kids feel just that. They really are a part of this dedicated little community of fighters”
The books title is “Little Brave Ones” and is a photographic journey through a day with Christa and children with CF from all over the United States. It simplifies and explains why they do all they must do to maintain their health, and why it is so important that we push for a cure. We all try to remain positive about Christa’s future, but science tells us that the median life span for a CF patient is in their thirties. While tit’s much better now than in decades past, the Lux family is not content.
Carrie hopes that this book will not only be of great comfort and pride to the CF population, but inspirational to those which can help the greater cause as well. She states, “I am living by faith that God gave Christa this disease because she was also born with an amazing spunk and persistent spirit, and that she can make a difference in this battle. We have to focus on the best possible outcome for this situation. Although this is a truly complex disease, with many aspects to address, we’re holding out for a cure.”
The book is now available online at amazon.com, and is becoming quite popular with others like the Lux family who face this disease head on day after day. They also hope that eventually all fifty states will require the CF screen at birth so that all children affected by CF can get life off to the best start possible.
Carrie, their mother, began to think about all the time devoted each day to keeping these CF symptoms at bay. “We strive to keep her airways clear and her digestive system functioning as well as possible. It's not an easy task, but as parents who love her dearly we make the choice to share this burden with her. It's something that she will have to keep up until science turns over a true cure.” states Carrie.
With a little help from a number of online contacts made with other parents across the country also fighting CF at their homes. A photograph book titled "Little Brave Ones" was compiled. The book was published in March and is beginning to pick up popularity with our little community of fighters. According to the national Cystic Fibrosis Foundation, this is a disease which plagues approximately 30,000 children and young adults across the country. Until recently, it was not uncommon for a child to struggle through childhood with repeated respiratory illnesses and poor growth and development, to find out later in life that they have cystic fibrosis. Many states here in the US now have included the CF screening on their list of genetic abnormalities checked for at birth. This is a very positive step because in many cases, so much more can be done in terms of prevention when the diagnosis is made early.
I hear positive comments on the book over and over from other CF afflicted families. Their children love to see the photos of other kids who use the same type of equipment and engage in the same daily challenges as themselves. It's very rewarding as the author to know that CF kiddos now feel like they truly fit in somewhere. The book is now available on Amazon.com.
A recently published picture book trails the Cystic Fibrosis Foundation’s recommendations to include a newborn screening for CF on all newborns.
June 12th, 2006, Cherokee, IA- It’s early morning at the Lux household, in the middle of the great green Midwest. Four year old Christa wakes up and begins her daily regimen of breathing treatments, chest physiotherapy and medications before heading to bible school with her big brother Devin. Christa is one of 30,000 plus children and young adults across the nation fighting the genetic killer cystic fibrosis.
Christa was diagnosed shortly after her birth and has fortunately been directed to life saving care at the University of Nebraska Medical Center in Omaha Nebraska. This care, her mother states, has been critical to her growth and development. It has become a well known fact in the CF community that patients diagnosed at birth can gain weight more easily and have better nutrition with early diagnosis. “Christa was eating all the time as an infant, but she was nutritionally starving because nothing was being digested by her body”, remembers Christa‘s mom, Carrie. CF essentially causes the tissues of the lungs, intestinal tract and pancreas to become thick and plugged, which hinders their functions. In the lungs this often leads to repeated infections, scarring and declining lung capacity. In the digestive tract, the problems occur because necessary enzymes from the pancreas which break down fats and proteins are blocked from their normal duties.
According to statistics available today on the Cystic Fibrosis Foundation’s website, just twenty-nine states in the US mandate the CF screen at birth. Of these twenty-nine, six of these require the test, but have yet to implement it as standard procedure with a newborn. “As a mother of a CF child, I strongly encourage every state’s legislature to consider this small addition to the already existing newborn panel. It could potentially save many families valuable time in their fight against the disease” adds Lux.
Carrie & her husband Kevin are committed to sharing the burden of this disease with Christa and do their best to keep her healthy and active. One recent challenge they have faced is the mountain of questions posed to them by their children about this disease. These inquisitions lead Carrie to believe that many CF children and their siblings, friends and family across the country must be wondering the same things. Children with CF are often kept at distance from one and other so as not to share potentially harmful germs. This is medically sound, but difficult when raising a child. CF children can feel isolated or alone in their fight, having no one “like themselves” to befriend. “It’s a simple truth of human nature that we all want to feel like we fit in” says Carrie, “this book will help CF kids feel just that. They really are a part of this dedicated little community of fighters”
The books title is “Little Brave Ones” and is a photographic journey through a day with Christa and children with CF from all over the United States. It simplifies and explains why they do all they must do to maintain their health, and why it is so important that we push for a cure. We all try to remain positive about Christa’s future, but science tells us that the median life span for a CF patient is in their thirties. While tit’s much better now than in decades past, the Lux family is not content.
Carrie hopes that this book will not only be of great comfort and pride to the CF population, but inspirational to those which can help the greater cause as well. She states, “I am living by faith that God gave Christa this disease because she was also born with an amazing spunk and persistent spirit, and that she can make a difference in this battle. We have to focus on the best possible outcome for this situation. Although this is a truly complex disease, with many aspects to address, we’re holding out for a cure.”
The book is now available online at amazon.com, and is becoming quite popular with others like the Lux family who face this disease head on day after day. They also hope that eventually all fifty states will require the CF screen at birth so that all children affected by CF can get life off to the best start possible.
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