@_ollies_army: The natural history of children with CLN2 Batten Disease shows that by the age of 6 they will be completely dependent on others for all their needs. They will suffer from uncontrollable seizures and movement disorders. Vision loss, loss of mobility, loss of speech and swallow all occurs before the age of 6. Quality of life will sadly be very poor and life expectancy is just 6 - 12 years 💔 Life for children on Brineura (enzyme replacement therapy) is very different. Amelia age 12 is able to sit, move around and stand independently. She walks with assistance. She is able to speak in short sentences in context and with meaning. She eats and drinks orally. Is able to use the toilet as needed and has only ever experienced two seizures in 12 years. She attends full time education, is able to access after school activities such as gymnastics with her friends and is able to express her feelings and emotions. There is not yet enough long term data to say what the life expectancy of a child on Brineura will be but we already know many are exceeding 12 years alongside experiencing a good quality of life. We are well aware that this treatment is not a cure but is giving us as a family the gift of time. A child’s life should not come down to value of money it is unfair and inhumane. STAND WITH US @Biomarin @NHS UK @This Morning #battendisease #battendiseaseawareness #olliesarmy #olliesarmybattlingagainstbattens #ameliasarmy #becauseofbrineura #standwithus #mumblog

Ollie’s_Army15

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Monday 10 March 2025 16:57:06 GMT