This is Rachael, she is thirty one years old. She was was born with a rare syndrome called Cornelia De Lange, also known as Cdls. Cdls is a rare genetic disorder that presents at birth caused by specific gene mutations. Individuals with Corneila de Lange have distinctive facial features, developmental delays, and intellectual disabilities. The characteristics of Corneila de Lange can range from mild to severe. Rachael has more severe traits of the syndrome and was given a life expectancy of ten years. Some of Rachael characteristics include short stature, limb abnormalities, GI disturbances, swallowing difficulties, respiratory complications, heart complications, and intellectual delays in which she is non-verbal. Rachael requires full time RN care because of her G-tube feeds, medications, aspiration risks and suctioning, respiratory assistance, and other emergency interventions. Maintaining full time care has always been a hardship because of staff shortages in home health and finding caregivers qualified to care for Rachael. Even despite the obstacles Rachael has endured, she truly has overcome and beat all the odds against her. She lives a beautiful full life and I believe she was put here to not only bless our family but to bless everyone else she encounters.

 

I am Ray's older sister Sarah and both her full time caregiver and nurse. I have been caring for Rachael for the last five years, which has been my biggest passion in life. I have been a nurse for over 10 years working primarily in the emergency room, specializing in pediatric emergency care. The moment I met my sister I knew I wanted to be a nurse and care for her. Rachael is my full time job and both my family and I provide all her nursing care and activities of daily life. Seeing the joy my sister has knowing she is loved and cared for is the reason I strive to give her the best life. It is not an easy task, the care for Rachael is demanding and complex, but I think God gave me the greatest strength in my ability to put her needs before my own.

 

I believe that disabled people are perfectly imperfect creations from God that teach us the full representation of the love Jesus has for us. I believe that love is medicine and is the biggest reason my sister has thrived in her life. I started Ray's Respite Care to help sustain the care and needs of Rachael because of her expenses, equipment, and resources required to provide her the quality of life she deserves. My goal is to be able to open a residence for medically fragile children and adults to provide respite care to families that enable them to have breaks and periods of rest, but also feel comfortable and confident with the care their child and/or adult will receive. Respite care is important because it provides temporary relief for caregivers to take a break for themselves, reduce stress and burnout, and sustain the primary caregiving relationship. I would love to be able to aid families with education and information regarding everyday care and how to handle emergency situations. I know for Rachael advocating is something I am passionate about because the healthcare systems are typically not aware of how to handle or approach her. I would love the ability to advocate where needed to help families ensure their loved one is receiving not only the highest level of safe care but also that they are being heard.