Juliann is 11 1/2-years-old and was diagnosed with a rare genetic data disorder called Cockayne Syndrome. C.S. causes children to age before their time. C.S. children have cataracts, hearing loss and are extremely sensitive to hot weather and cold weather just to name a few.
Though they are getting older like everyone else, they are getting older faster. Juliann is in an 80-year-old body. The average life expectancy for children with C.S. is 12. Many children pass away before this age.
We are seeing that Juliann is not progressing like she used to. We currently have to puree her food as her muscles are very weak, and she is sleeping more as her body is getting tired. She is in a wheelchair and cannot stand on her own.
Currently, she is regressing in her disease process. As she cannot maintain her body temperature, our house has to be very warm in the winter months and cooler in the summer. We are trying to make Juliann the most comfortable she can be and spend every second with our little girl.
The Aubrey Rose Foundation provided a Dyson Pure Hot + Cool Air Filtration System to help purify the air she breaths.
The Aubrey Rose Foundation thanks all of you who donate to the Aubrey Rose Foundation for your kindness, generosity and helping children like Juliann and their families!