Jessica Lyon's daughter Emily was diagnosed with CLN6 in 2021, being the only known child in Australia with this variant until very recently.
Jessica says "It was devastating and such a life changing diagnosis. It's cruel that Emily has lost so much independence but it's a blessing that she isn't really aware of what is happening. She is such a happy girl, she's a fighter and the simple things in life make her smile."
Emily turned 10 earlier this year and life continues on. She goes to school a couple days a week but despite the reduced days as she tires easily, attending school is still so important for her. Emily enjoys seeing her friends and teachers, who all love her dearly. She loves to watch and interact with the other kids, music and going to the library. She absolutely loves an outing too, even just to the shops or pharmacy. In the warmer months Emily does hydrotherapy once a fortnight, she kicks, splashes and giggles, swimming is one of her favourite things to do.
Unfortunately this winter saw Emily have her first major health scare. She was admitted into ICU with pneumonia and it took many weeks for her to recover.
"Em is such a brave, strong girl to bounce back. Unfortunately it is a sign of what is to come, so we are mindful to protect her from illnesses going around" says Jess. "The support we received while we were in hospital was overwhelming. It doesn't change the circumstances, but it lightens the load knowing you have family, friends and a community behind you. It gives you that little bit of extra strength".
Their hometown of Laidley in QLD have backed Emily and her family to “Paint the town Pink” in support of Batten disease awareness. The awareness movement has continued to grow over the last 3 years. What began as a fun "pink day" at Emily's school has now spread to the wider community, with businesses in the main street, other schools and the local council all getting involved. Local businesses decorated the town with pink; pink paper flowers in all the garden beds, the bakery made pink cupcakes even the mail lady decorated her car in pink. Members of the community also tie pink balloons to their mailboxes to show their support.
St Mary’s Primary School and the Laidley Business District have been the drivers of the support. This year, Lockyer Valley Regional Council joined in supporting ‘Emily’s Day for Batten Awareness’. Their staff donated money to wear pink and The Gatton Administration Building was lit up in pink as a show of solidarity.
Jessica says "It means so much to know how much our community cares about Emily, their support is amazing and it is such a motivator during those hard days."
