In two days it's 🧡 #BattenDay2023 🧡

You could plan to wear something orange and share our stories around.

It's a rare disease but together we're stronger 💪

#RareMaisPasSeul

#VML

#BDSRA

#BattenDiseaseUK

Through the years we've come to meet families with #Batten and other lysosomal diseases. Thanks to charity events, we made friends (hello Pierre👋) among this huge loving community who works and acts on behalf of the patients 🧡 #BattenDay2023
#VML
#BDSRA
#BattenDiseaseUK

Friends and family have always been supporting us: asking how Maëlyn is doing; listening to her father's podcast [fr] https://lecridelagirafe.org/serie/quand-meme-pas-papa/ ; simply reaching out 🧡

Thank you, merci, takk, danke, gracias

#BattenDay2023
#VaincreLesMaladiesLysosomales
#BDSRA
#BattenDiseaseUK

Batten disease requires a multidisciplinary medical and social dreamteam to work alongside our family.

I think about Specialised School Teacher Florence, who organised friendly socials for Maëlyn even after she left school. Thank you 🧡

#BDSRA #BattenDiseaseFamilyAssociationUK #VaincreLesMaladiesLysosomales

Her diagnostic journey lasted more than 4 years. Why does a 6 year-old start losing her sight? Having epilepsy seizures? Only a genetic test could answer: her cells' recycling centers (lysosomes) don't work, leading to progressive brain deterioration. A rare genetic disease without a cure.

Rare genetic diseases often have too long a diagnostic journey, and we all hope that this was faster & better cared for. Family organisations do a fab job already:

#BattenDay2023 #VML #BDSRA #BattenDiseaseuk

My niece loves listening to audio books while cuddled in soft, smooth fabrics. She smiles when her dad says silly things.
🧡
Her parents & carers provide round the clock care needed for a toddler mind with multiple disabilities.

#BattenDay2023 #BDSRA #BattenDiseaseFamilyAssociationUK #VaincreLesMaladiesLysosomales 🧡

Hi! I'm Emeline, über lucky aunty to 18-year-old Maëlyn. She has #Batten disease.

#BattenDay2023 is round the corner, so I'll thread what I know about this neurodegenerative disease.

#BDSRA #BattenDiseaseFamilyAssociationUK #VaincreLesMaladiesLysosomales 🧡