emelineIn 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 💪
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
#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
Quand même pas, Papa !
« Quand même pas, Papa ! » Carnet de bord d’un proche aidant Dans ce podcast, je raconte mon quotidien, celui que je vis en accompagnant ma fille atteinte d’une maladie génétique dégénérative. Adapter le quotidien, se confronter aux regards extérieurs, les défis d’une mémoire qui m
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: