Batten Disease Awareness Day – Day for Emily

BATTEN DISEASE AWARENESS DAY is MONDAY 9th JUNE.

We are once again “painting the town PINK” for Emily Day 💗 to show our support and raise awareness of this life limiting illness.

Batten disease is a terminal illness that takes away a once normal child’s ability walk, talk and eat. There is currently no cure or treatment. My daughter Emily is 11 years old and is one of only two children in Australia with the CLN6 variant of Batten disease. There is no cure or treatment.

Since Emily’s diagnosis is 2021 our town (Laidley) has been holding an “Emily Day” in June every year to show their support of Emily and to raise awareness and funds for batten disease Australia.

Each year Emily’s day has been getting bigger and bigger, with what started as a pink dress up and disco at her school, has now extended to our wider community.

Business in town decorated with pink, the community wearing pink, mailboxes with pink balloons, our local council lighting up the council building pink, bakery selling pink cupcakes, the local shoe shop selling pink shoes all in support of Emily and Battens disease.