Ticket sales will run January 16th - February 13th
Tickets can be purchased at Brad's Hair Studio
Drawing will be held on February 14th
We will be raffling off 4 gift baskets full of hair-care products and styling tools valued at over $300 per basket!
(Baskets contain products and styling tools from: Redken, Kenra, Soma, Pureology, OPI, Essie, Hot Tools and much, much more!)
Olivia’s Story
Olivia is 3 years old and was diagnosed with Leukodystrophy at the age of 2. Leukodystrophy refers to a group of disorders characterized by dysfunction of the white matter of the brain. The Leukodystrophies are caused by imperfect growth or development of the myelin sheath, the fatty covering that acts as an insulator around nerve fibers.
There are many forms of Leukodystrophy. What Olivia has is called Alexander Disease. It is a very rare disorder that results from a genetic mutation and mostly affects infants and children, causing developmental delay and changes in physical characteristics.
Olivia cannot walk, talk, crawl or roll over. She can sit up but needs support. Currently Olivia struggles with eating. She has a Gastronomy Tube in her stomach and is 100% fed through that as well as all her medications. She currently has seizures everyday. Olivia reacted to the formula she was on and had issues with reflux, so now all of her formula is made from scratch at home with natural foods.
The prognosis is generally poor. With early onset, death usually occurs within 10 years after the onset symptoms. Usually, the later the disease occurs, the slower its course is.
Currently, Olivia attends the Clinton County Regional Educational Service Agency in St. John’s. She is in the Severe Multiple Impairment classroom and receives all her therapy at school.
Getting a handicap van will help us with transporting Olivia. Olivia gets her new wheelchair in January. The wheelchair is very customized for her. It does not fold up so at this time it is extremely heavy. Currently there is not a lot of assistance for families who seek wheelchair ramps for their vans. The ramp will be a great benefit for us because Olivia can stay in her chair and be securely tied down in the van. Her parents do not have to worry about lifting her in and out of the car. As she grows, she will only get heavier and longer, so having her in a wheelchair and utilizing a ramp will be a blessing for her and her parents. The cost of a manual conversion is approximately $16,000.
Olivia has the sweetest smile and has given such joy through all the trials and challenges. She is a blessing!