Jenny S Journey With Cystic Fibrosis

This is the true story of Jennifer Sunderland and her experiences with an incurable lung disease. Her struggles and triumphs are documented as they happened year by year. Her personal relationship with Jesus Christ gave her the hope and strength to continue on.

Cystic Fibrosis has seen dramatic advances in treatment since the last edition, including targeted cystic fibrosis transmembrane conductance regulator (CFTR) protein modulators for most CFTR gene abnormalities. This new fifth edition is an update and expansion of the rapid clinical and scientific advances in improving prognosis, and the impact of COVID-19, all of which has transformed conventional models of care. It covers basic science, such as how detailed understanding of the biology of the CFTR gene and protein has led to novel and beneficial therapies, as well as all aspects of clinical management in high-, middle- and low-income settings and the voices of individuals with CF from across the world. It will be a useful reference for clinicians, including all levels of trainees, across the whole multidisciplinary team, scientists and students. Key Features • Follows an appealing organization of chapters, by developing fundamental knowledge of the reader before moving on to more complex or developing topics. • Presents a comprehensive, authoritative and up-to-date text, integrating fundamental science and clinical aspects of cystic fibrosis providing an attractive read for clinicians, trainee doctors and scientists. • Draws on global expertise and reflects best evidence-based practice from experts conducting cutting-edge clinical and basic science research from around the world.

When you were five days old, you had a routine heel prick test and we thought nothing of it. A couple of busy weeks later, I received an unexpected phone call. We were to attend the hospital for further investigations into the heel prick test result. That phone call brought with it some devastating news. You - our precious baby, our baby that we had waited so long for - had cystic fibrosis. Cystic Fibrosis. Daddy and I didn't even know that we were carriers of the faulty gene, in fact we knew very little about the condition at all. Our beautiful, perfect little son! What had we done to you?Reeling from the shock and grief, we struggled at first to accept this new reality. Nothing made sense anymore, everything had changed. With so much to take on board, so much to learn and understand in a short space of time, we felt completely overwhelmed. Until we realised that not everything had changed. In fact, nothing much had changed at all. You were still our wonderful, amazing, funny, charming, loving, smiling, happy, uplifting little boy. Now we just had to learn how to deal with this diagnosis and protect your health as you grew up. This is the story of our journey together as a family so far. Our journey through the grieving process and out the other side to acceptance and the embracing of life itself. Along the way we have learnt so much about cystic fibrosis; we have learnt how it affects those with the condition, their life's challenges and their potential life expectancy. But we have chosen to focus our energies on the positives, and on hope. Hope in the scientists and researchers who are working hard on more targeted treatments for CF. Hope for a cure. Hope for your future.But, above all of that, we focus on you. You are the centre of our universe and in everything we do, we think of you first. Through you, our eyes are now open to the fact that all living things will die. We are mortal. We will die. Every last one of us. And no-one knows when. Of course we already knew that, but now we embrace it and we feel liberated. We are aware. We are no longer sleepwalking through our own lives. It is a good thing; a positive thing. And this is a positive story. Even bad news has a silver lining, and you are our silver lining. We will have a wonderful journey together, whatever it may bring. Life is a game, let's enjoy it!We could never have been prepared for this diagnosis to happen to us, but know this: we love you with all our hearts and we would not change you for the world. Of course, if we could take CF away from you, we would. But we can't. Let's hope and pray that the scientists can. And in the meantime, we will live life to the fullest and take nothing for granted, because life is precious and we have been gifted that fresh awareness through you. You are only two years old, yet you have already taught us so much. You are teaching us fresh approaches to, and perspectives on, life. Take chances! Experience everything! Don't be so serious - laugh and laugh hard. It's Just Our New Normal is the story of how we are blossoming as a family; taking the best care of you that we can and then putting cystic fibrosis to the back of our minds so that we can enjoy our day together. I hope that anyone facing a similar diagnosis may find some comfort in my words. We don't know what the future holds, but we have today. And today is good. All proceeds from the sale of this book will be donated to the Cystic Fibrosis Trust and The Butterfly Trust.

Silver Medal for Parenting in the Independent Publishers Awards "This is an outstanding book that addresses the challenges of chronic disease in children from multiple viewpoints with a great deal of practical knowledge. Given that Diabetes is one of the most common chronic diseases of childhood, this work will serve to guide families in navigating the sometimes challenging journey to ensure the best possible outcomes for all." - Robert Gabbay, MD, PhD, Chief Scientific and Medical Officer for the American Diabetes Association Written by leading mental health professionals, this warm and accessible parenting book for children with chronic illnesses offers clear, practical guidance for all aspects of the journey. When you’re focused on ensuring your child gets the best possible treatments for their symptoms, it’s easy to overlook or dismiss the impact the illness can have on your relationships and emotions. This book places your psychological well-being front and center, so you can be the best caregiver possible for your child.

Using Jennifer Hale's own writings and images as well as interviews with Jennifer's parents, Evan Michael Codell and Donna Codell, presents the life and experiences of Jennifer Hale and her family as Jennifer lived with cystic fibrosis.