Sarah was never meant to live past five years old. Born with Holoprosencephaly, she defied the odds from day one.
The condition is usually characterized by facial deformities and the fusing together of the left and right side of the brain, which restricts brain development. On average only 22 individuals are born with it a year and through this, Sarah has proved that she is an incredibly special girl.
Sarah’s grandmother Margaret and her husband Phillip have been caring for her since she was 6 months old. She has always been encouraged to be an active member of the family and loves to socialize, just like any other 28-year-old young woman.
For Margaret and Phillip, who are both retired, caring for Sarah never took a second thought. In their 70’s now, the couple receive support to care for their granddaughter during the day but when it comes to the nighttime they provide 100% of her care. This is just one example of the undying love and support that they offer their grandchild.
“They said she’d never talk, that she wouldn’t know night from day, but she knows it all. You can’t pull the wool over her eyes. I’d say that’s because she’s always involved in everything, we let her know that she’s loved and wanted.” – Margaret
Despite having Holoprosencephaly, Cerebral Palsy, Microcephaly and Quadriplegia, Sarah is described by her loved ones as being social, happy and an incredibly healthy young woman. She loves music, cute boys and is out in the community, seeing friends or shopping every day of the week.
“A lot of people can’t believe how healthy she is! You would expect with someone like Sarah who has severe disabilities that she’d be sick all the time. I really think it’s because she’s involved in everything that we do as a family, she’s never left alone. If we’re in the kitchen, she’s in the kitchen if we’re out the back at the barbeque, she’s there.”
For the family, it is imperative that they keep Sarah at home forever. They attribute her advanced abilities to her constant stimulation and attention that she receives as part of the family unit. Margaret and Phillip are in the processes of ensuring that living in a nursing home is never a reality for Sarah and describe life with Sarah as being the best thing they have ever done. She is the light of the family!
“The hardest part of caring for Sarah would be if she was to die. That would break me. We’re stuck together, she’s my world and she knows it.”
“Before she was even born, something told me that she was made for me. I’m not religious but I sure do believe in that. If anything happens to Sarah, then I guess I go down too.”
Part of being able to keep her at home, where she is stimulated and has the freedom to be a young woman is facilitating her access to the community. For Sarah, this comes through the use of an accessible vehicle that is large enough to accommodate her wheelchair and carers.
“For Sarah, the car is her life. Otherwise she’d be stuck at home with us and wouldn’t go anywhere.”
When Sarah was provided funding through the At Home Care grants to buy the van that will allow her to go out, her grandparents were beside themselves with excitement. Nothing makes them happier than seeing their beautiful granddaughter living a young life and doing the things that make her happiest.
