06/09/2025
đŠ International Batten Disease Awareness Day â June 9th đŠ
On May 25, 2023, our world changed forever.
That was the day our daughter Isla was diagnosed with Batten Disease CLN2, a rare, devastating, and currently incurable genetic disorder. Before that moment, we had never even heard of Batten. Now, itâs part of every breath we take.
Batten Disease is a fatal, inherited disorder of the nervous system that typically begins in early childhood. For children like Isla, symptoms often start with seizures or developmental delays, followed by the gradual loss of motor skills, vision, and speech. Over time, Batten takes more than any childâor familyâshould ever have to face.
But Isla is more than a diagnosis.
She is light.
She is love.
She is joy, laughter, and strength in its purest form.
She teaches us every day what it means to be brave. And today, we share her story because awareness matters.
Batten Disease is rare, but for families like ours, itâs all-consuming. Awareness leads to funding, which leads to research, which leads to hope.
If youâve never heard of Batten Disease before today, please take a moment to learn about it. Share this post. Talk about it. Ask questions. Help us keep pushing for better treatments, more support, andâone dayâa cure.
For Isla.
For all the children fighting Batten.
For the families walking this unimaginable road.
Together, we can be a voice for the voiceless.
Together, we can shine light into the darkness.
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