09/06/2026
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https://donate.biggive.org/campaign/a05WS00000EmkQHYAZ
🧡🧡🧡🧡🧡 Tuesday 9th June is Batten Disease Awareness Day 🧡🧡🧡🧡🧡
"I'm so incredibly sorry, but the results have come back and they aren't good. They've found changes in a gene called CLN3, which causes Juvenile Batten Disease."
I stared at him. I'd never even heard of it. His words meant nothing at first.
"It's a neurodegenerative disease, and there is no cure. The changes won't happen immediately, go and make memories with your boy. I am so, so sorry."
"I have Alice's results here, and they show that she also has Batten disease. There's nothing I can say other than I'm sorry, and we're here if you need us."
We are the faces of Batten disease.
To many people, it's a condition they've never heard of. But behind the name is a child, a family, and a community living with a devastating reality every single day.
Batten disease is a rare, genetic, neurodegenerative condition with no known cure. Children are born appearing healthy and develop normally, reaching milestones just like any other child.
Then, usually around the age of 5 or 6, they begin to lose their sight.
Their vision gradually deteriorates until they are permanently plunged into darkness and registered severely sight impaired.
Around the age of 10 or 11, complex epilepsy often develops. Seizures can be difficult to control and frequently require multiple medications.
At the same time, dementia begins to take hold, stealing pieces of the child you know and love.
Children may experience behavioural changes, hyperactivity, difficulties with concentration, understanding, learning and communication, confusion, anxiety, intense fear, memory loss, hallucinations, personality changes, and severely disturbed sleep.
As the disease progresses, they lose the ability to do the things most of us take for granted — walking, talking, swallowing, and eventually every aspect of their independence.
As a parent, you fight every day to make sure your child has everything they need. Most days, it feels like a battle.
But no matter how hard you fight, you cannot stop where this journey is heading.
You cannot slow it.
You cannot change it.
You cannot cure it.
Where you once looked forward to your children's futures, you now see loss in its cruellest form.
The outcome of Batten disease is always the same.
Life expectancy for a young person with CLN3 is typically from the late teens to early adulthood.
We have stood beside families in our community as they have watched their children die. We have listened, grieved, and mourned with them.
Every single loss is heartbreaking.
And we know that one day, it will be our turn.
Twice over.
🧡🧡🧡🧡🧡🧡 PLEASE HELP US RAISE AWARENESS 🧡🧡🧡🧡🧡🧡
On Tuesday, we are asking people to turn social media orange for Batten Disease Awareness Day.
Share this post. Wear something orange. Add orange to your day. Take a photo. Share it. Use the hashtags below. Help us spread awareness of this devastating disease and show your support for everyone affected by Batten disease.
Every share helps.
Every conversation matters.
Every act of awareness makes a difference.
Thank you, from the bottom of my heart, for the love and support you continue to show our family.
Batten Disease Family Association
The BDFA is the only patient organisation in the UK supporting families affected by Batten disease, an ultra-rare & terminal neurodegenerative condition that causes profound disability in children & young adults - providing holistic family support, advocacy, raising awareness & promoting research......
