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.

takeaways

• Sarah'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.

• A Sister's Love: Caring for Rachel
• Navigating Life with Cornelia de Lange Syndrome

• "Love is medicine."
• "Rachel grows on you."
• "It's just fair."

00:00

Childhood Experiences with Rachel

07:18

Understanding Cornelia de Lange Syndrome

09:07

The Importance of Love and Support

09:32

Finding a Partner Who Understands

11:38

Family Dynamics and Support

13:08

Daily Life and Responsibilities with Rachel

15:58

Raising Daughters with a Special Needs Sister

17:21

Communication and Education for Rachel

20:16

Navigating Healthcare and Funding Challenges

25:24

Advocacy in Healthcare: A Caregiver's Role

27:20

The Birth of Raise RespaCare: A Vision for Change

29:37

Building a Community: The Need for Respite Care

32:03

Connecting with Support: Legislative and Community Efforts

34:10

Healing Through Care: The Role of Veterans

38:51

Quality of Life: Ensuring Happiness for Ray

42:07

Creating Memorable Experiences: Travel and Adventures

43:51

Raising Awareness: Fundraising and Community Engagement

https://www.raysrespitecare.org/

https://www.instagram.com/rays.respite.care/