In this conversation, Sarah Ingledue shares her profound journey as a nurse and caregiver for her sister, Rachel, who has Cornelia de Lange syndrome. Sarah discusses her early passion for nursing, her unique relationship with Rachel, and the challenges and joys of caring for someone with special needs. The conversation delves into the importance of love and support in their lives, the daily responsibilities Sarah manages, and her aspirations to create a respite care service for families in similar situations. Throughout, Sarah emphasizes the significance of happiness, quality of life, and the need for better support systems for families with special needs individuals.takeawaysSarah's nursing background has equipped her to care for Rachel effectively.The bond between Sarah and Rachel is deep and rooted in love.Caring for a special needs sibling can be both challenging and rewarding.Respite care is crucial for families with special needs individuals.Sarah's husband is supportive and is pursuing nursing to help care for Rachel.Daily life with Rachel involves extensive care and attention.Sarah's daughters are learning valuable lessons about kindness and acceptance through their relationship with Rachel.Healthcare funding and support for special needs individuals is a significant challenge.Sarah is passionate about creating a respite care service for families in need.The importance of advocating for proper care and understanding in healthcare settings.titlesA Sister's Love: Caring for RachelNavigating Life with Cornelia de Lange SyndromeSound Bites"Love is medicine.""Rachel grows on you.""It's just fair."Chapters00:00Childhood Experiences with Rachel07:18Understanding Cornelia de Lange Syndrome09:07The Importance of Love and Support09:32Finding a Partner Who Understands11:38Family Dynamics and Support13:08Daily Life and Responsibilities with Rachel15:58Raising Daughters with a Special Needs Sister17:21Communication and Education for Rachel20:16Navigating Healthcare and Funding Challenges25:24Advocacy in Healthcare: A Caregiver's Role27:20The Birth of Raise RespaCare: A Vision for Change29:37Building a Community: The Need for Respite Care32:03Connecting with Support: Legislative and Community Efforts34:10Healing Through Care: The Role of Veterans38:51Quality of Life: Ensuring Happiness for Ray42:07Creating Memorable Experiences: Travel and Adventures43:51Raising Awareness: Fundraising and Community Engagementhttps://www.raysrespitecare.org/https://www.instagram.com/rays.respite.care/

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