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Finding Support and Information When Your Child Receives a Rare Disease Diagnosis
When your child receives a new medical diagnosis it can be helpful to seek support from other parents and caregivers who have been in your shoes. But if your child is diagnosed with a rare disease or condition it can be difficult to find information or a community of other families who share your experience. In this guide you’ll find resources that may help you as you begin to navigate life as the caregiver for a child with a rare medical condition.
Pediatric Palliative Care: What is it and Who Needs it?
Having a child with a serious illness is difficult for the entire family. Treatments that may be necessary to save or extend a child’s life can sometimes take as much of a toll on them as the illness itself. If your child has a serious illness, palliative care may be available and beneficial while they are being treated for their medical condition. Often confused or equated with hospice care (which is provided when a person is considered to be at the end of their life), palliative care can be added to a treatment plan at any time following the diagnosis of a serious illness. This guide explores the differences between palliative and hospice care, and share resources that may help you determine whether or not a palliative care program could benefit your child’s health and well-being.
Finding Your Support Community
A new medical diagnosis often comes with more questions than answers, as well as a flood of emotions. As a caregiver to a child who has special needs or a complex medical condition, it can be helpful to find a community of supportive people who understand the challenges you have faced or will face while caring for your child. With the rise of social media and other web-based resources, information has never been easier to find and making contact with others is a breeze. But how can you be sure that you can trust the information or people with whom you are connecting? In this guide we will share some tips on how to find information and a community of support when your child is diagnosed with a disabling medical condition.
Medical Identification Accessories
A medical identification or medical alert accessory can be a life saver in an emergency. It can provide critical information to a person assisting a child or adult who may not be able to communicate their condition or needs. If you or a loved one has a severe allergy, medical condition, disability or special need, adding a medical identification accessory to your daily outfit can alert emergency or medical professionals before they provide care. In this guide you will find more information about who may need to wear or carry some form of medical identification or alert, and the variety of accessories that are available for those who do.
Service, Emotional Support, and Therapy Animals: What’s The Difference?
Although the lines between service, emotional support, and therapy animals may seem blurred, this helpful guide will explain the difference between each type of animal, the services they provide, and the intricacies of bringing one into your life.
Wish-Granting Experiences & Gifts
Wish-granting foundations help families lighten their load, granting wishes ranging from a trip to Disneyland to a new computer to a chance to throw the first pitch at a major league game. If your child has a serious illness, disability or medical condition they may be eligible to receive a gift or have a wish granted through one of the organizations listed in this resource guide.