The genetic disorder affecting Holly

26 Jul 2019

When Holly was one year old, parents Raelene and Brett noticed that her development was delayed, that she wasn't walking or talking. Concerned about their daughter, the couple visited their local hospital, where after some tests it was discovered that Holly had Rett Syndrome. 

Rett syndrome is a genetic disorder exclusively found in females. There are about 200 diagnosed cases of Rett syndrome in Australian children. The disease affects the brain and over time causes the body to lose movement in the arms and legs, as well as the ability to speak. There is currently no cure. 

As part of ongoing treatment, Holly visits the Rett Clinic at The Children's Hospital at Westmead (CHW) as well as various departments within the Hospital including occupational therapy, a speech therapist, dietician and dentist.

Raelene and Brett are actively supporting CHW’s Dr Wendy Gold with her Rett Syndrome research in the hope of one day finding a cure. 

"Wendy has been researching Rett Syndrome and looking for a cure for the past 10 years. We've just been trying to help her get the money she needs so she can find a cure for our little angel," Raelene said. 

Brett will be participating in Team Bandaged Bear City2Surf on August 11 to raise much-needed funds in support of Dr Gold's research. 

Team Bandaged Bear City2Surf 2019 raised an incredible $414,000 for The Children's Hospital at Westmead and Bear Cottage. Read more about the day here