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Families living with an SCN8A diagnosis frequently are confronted with experiences of deep loss and grief, both during the child's life and after. There are many types of loss and grief that are common to our community, but which often are not well understood outside of the medically complex world. We will be discussing these experiences, talking about the importance of self-care, and highlighting the ongoing support programs that TCSF offers for SCN8A families.
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Parents of medically complex children have to make a myriad of decisions, big and small, every day. It's fatiguing. Understanding how you process decisions, and recognizing how your child's providers support your decisions can help mitigate feelings of overwhelm, fear of regrets, and create an environment where decisions can feel shared.
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What is palliative care, REALLY? Hospice care? Concurrent care? Too often these services are misunderstood, creating fear and anxiety in families and hesitancy by providers to recommend them. Come learn about each—how they can support your care goals and help make each day as good as it can be for your child and family.
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This session explains what advance care planning is and how exploring what is important to you and your family, including a framework for making difficult decisions, can demystify much of what we parents fear when considering the possibility that our child will die. Following the adage of 'name it to tame it,' this session also offers practical resources to help you prepare for what may come and feel more empowered to be present at your child's side.
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Spring 2021
Spring 2023
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Spring 2022
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