After a tour of the Home and meeting the staff, Kelly and I felt comfortable with the facility and programs. We have never looked back on our decision.
by Sian and Kelly, Cerys’ Parents
Cerys was diagnosed with Angelman Syndrome when she was six months old.
Angelman Syndrome is a rare neurogenic disorder. It is characterized by a severe global developmental delay. “Angels,” as they are often referred to, have little or no verbal skills, poor gross and fine motor skills and possible seizure and sleep disorders.
At just six years old, Cerys has had to endure more medical procedures, hospital stays and appointments with specialists than most adults would have in a lifetime. Following her second birthday she started to experience seizures. There was a point when Cerys would have close to 200 seizures a day.
Caring for a child that is medically fragile is a full time job. The smallest illness can mean an emergency trip to the hospital. My husband, Kelly, and I are lucky to have a supportive family who helps us with caring for Cerys. However, as she grows her care becomes more complicated. She has and always will require 24/7 supervision. It is not easy to leave her overnight with family members. There are too many “what ifs.” What if her g-tube falls out, will they know how to replace it? What if she suffers a major seizure? What if is she pulls an all-nighter and refuses to sleep?
It was through another parent of a child with Angelman Syndrome that I came to learn about The Darling Home for Kids. Kelly and I were initially very hesitant with the idea of leaving Cerys in the care of someone else. We knew we needed additional support for our family and that would require trust. After a tour of the Home and meeting the staff, Kelly and I felt comfortable with the facility and programs. We have never looked back on our decision.
What does The Darling Home for Kids mean to our family? Several times a year it allows us time to re-charge our batteries, it allows us to stay up a little later and sleep in a little longer. It allows us to give 100% of our time and energy to our two sons. It also prepares us to face any curve ball that Cerys’ health throws at our family, and tackle it head on.
We cannot thank you enough… the volunteers and donors that make The Darling Home for Kids possible for my family and so many others.