GREAT FRIENDS. GREAT FOOD. GREAT FUN.
These are the key ingredients of Summer Nights on the Green, the lawn bowls and fundraising event that brings people together to raise awareness and vital funds for beautiful ‘Tayla’,6 year old girl who has Batten Disease. Tayla loves dancing, horses, Peppa Pig & swimming.
About 3 years ago, Tayla suffered her first seizure and after extensive tests was diagnosed with Batten Disease (CLN2) a rare neurodegenerative disease that is estimated to affect only 1 in 100,000 children for which there is currently no known cure.
“Batten Disease is an inherited genetic disorder and a relatively unknown condition. A missing enzyme in the brain cells do not allow them to function as they should and the result is that waste builds up in the cells and these cells die causing a range of developmental delays in speech, ongoing seizures, loss of motor skills, early dementia, intellectual disabilities, vision loss and eventually death before adolescence.”
The devastating impact of Tayla’s diagnosis on this young family is further exacerbated by medical and travel costs associated to treat Tayla. Currently the family are a part of a medical trial in Columbus Ohio, USA where Tayla receives fortnightly infusions of the drug Brineura directly to the brain via permanent shunt, to prolong her quality of life.
As a result the family has now been in the US for the last 2 years to provide the necessary treatment for their beloved daughter, where she has received over 60+ Infusions. Recently (after a lot of lobbying) the Australian Government’s decision to finally include the drug Brineura on the Life Savings Drugs Program, making the same treatment viable in Australia. This is very exciting news for Tayla and her family.
“We are so very EXCITED to share the incredible news that the Australian Government have included Brineura (The drug that Tayla receives every two weeks) on the LIFE SAVING DRUGS PROGRAM. Not only does this mean that we can now come home to get Tayla treatment, but all future kids in Australia diagnosed now have HOPE!”
Our FUNDRAISING GOAL is to raise vital funds to purchase adaptive equipment for Tayla to use around the house so that she is safe and sensory equipment to create a therapy room for Tayla where she can engage and enjoy the senses: touch, sound, visual, spatial awareness and emotion.
The biggest cost will be her ongoing therapies with OT, Speech and Physio for the next few months while Tayla waits to be accepted on the NDIS.
Batten Disease makes our children live in darkness, it steals our children little by little, day by day, but one thing Batten Disease can’t do is stop the light that shines from them!
SO GET A TEAM TOGETHER, RAISE FUNDS AND GET ON THE GREENS!