I am so grateful to the American Legion Post #248 of Colonia for choosing my 5-year-old daughter Brianna to be the recipient of this year’s annual charity picnic. It’s going to be at the American Legion, 806 South Middlesex Ave in Colonia this Saturday August 23rd. They’ve planned a huge picnic with a live band, silent auction, food, games for the kids, and a horse shoe tournament!
All of the proceeds will go to benefit Brianna, who has Pallister Killian Syndrome (PKS), an extremely rare genetic disorder that leaves Brianna blind as well as profoundly disabled mentally and physically. Only 200 people in the world have been diagnosed with this devastating disorder. Please visit the “About” section of this blog to read “Brianna’s Story” and learn more about Pallister Killian Syndrome.
The fundraiser will help cover Brianna’s monthly expenses from diapers and special foods to much needed equipment and services that health insurance either will not cover or only covers a portion of. She will be able to finally have a stander, which will help her body to build strength. Because Brianna’s bone density is so low, she is more prone to broken bones as she grows and can get osteoporosis if she does not take weight through her legs and feet regularly now. The stander will prevent her from regressing and will strengthen her bones.
Saturday’s event is also making it possible for Brianna to have additional physical, cognitive, and occupational therapies. Brianna’s progress depends on constant stimulation of her senses and muscles. The genetic disorder has caused diffused brain damage and the neurons of the cells of her brain are not able to communicate without their signals being interrupted. For example, the signal from her eyes does not reach the vision center of the brain resulting in Cortical Visual Impairment. She is blind. With stimulation, however, these neurons form new pathways and it is possible for their signals to eventually reach their destination in the brain over time. For instance, Brianna was deaf at birth and I have incorporated loud noises and other sounds into her therapy over the years. Now she can hear perfectly. Her therapists and I work hard to help Brianna reach her goals and live a full, happy and healthy life.
Recent studies on PKS have found that 96% of children develop seizures by age six. As Brianna grows bigger and nears her sixth birthday, where the risk for seizures greatly increases, I will need more help to insure her continued safety. Hopefully, with the proceeds from the fundraiser and other resources that I am researching, I will be able to find someone to help me with Brianna on a daily basis.
Brianna is an incredible child with a vibrant spirit. She is pure, unconditional love and is truly making a difference in the world just by being who she is!
This incredible event is an amazing blessing and I am so thankful for all of the individuals who are working hard to make possible. It’s going to be a lot of fun! Hope to see everyone this Saturday!