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

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 🧡