Today is International Batten Disease Awareness Day 🧡 This means that families all over the world will be raising awareness of a disease which affects children and young adults. Batten Disease has no cure and is always fatal. Help us to create awareness by interacting and sharing our posts 🧡 We are super proud of our little girl, she was born into a world of rare disease. At three years old she is already advocating for her brother and sister who are affected by this horrific disease 💔 Batten
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Today is International Batten Disease Awareness Day 🧡 This mea…
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Life for the moment & all that jazz…… #battendisease #awareness #lifelimitingdiagnosis #raredisease #olliesarmybattlingagainstbattens #olliesarmy #ameliasarmy #moments #memories #love #life #thankful #cure | Ollie's Army Battling Against Battens
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It has been incredibly difficult for us to make this video, looking through old videos and photographs have brought with them sleepless nights. But as you know, we set up Ollie's Army to raise awareness, even though at times its painful to explain over and over again that our children are dying. We know awareness is vital for not just our children, but for all families affected by Batten Disease. Please watch and share our journey to help raise awareness of Batten Disease. | Ollie's Army Battlin
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The only drug that treats children with a rare degenerative disease called Batten disease could be withdrawn within the next few months if negotiations over its price fail. Brineura is currently being offered under a special funding programme to 40 children in the UK. But at more than £500,000 a year, the National Institute of Health and Care Excellence has already said it is not affordable. Families have been warned there is now no guarantee their children can continue with the treatment, which
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The only drug that treats children with a rare degenerative disease c…
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The youngest of the tribe doing her bit to raise awareness 🧡 Show her some love by liking & sharing and help her to spread the awareness of Batten Disease 🧡 Batten disease is a group of fatal genetic disorders. There are 13 types. Batten Disease affects the body’s ability to get rid of cellular waste. Waste builds up in cells all over the body. The buildup causes seizures, vision loss, mobility, speech and movement, childhood dementia and eventually, death. There is no cure for Batten disease.
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The youngest of the tribe doing her bit to raise awareness 🧡 Show her s…
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A new children's book is helping families talk about rare, fatal Batten disease
A new children's book is helping families talk about rare, fatal Batte…
Dec 3, 2022
ABC NewsKathleen Calderwood
Tomorrow, 28th February, is Rare Disease Day. Ollie and Amelia both have CNL2 Batten Disease which is classed as a ultra rare disease. Ollie and Amelia live with this disease everyday, it affects every aspect of their lives. However living with a ultra rare disease affects us as a whole family. We don’t often speak about Ollie and Amelia siblings, this is to respect their privacy and to enable them to grieve the loss of their siblings in their own way. This might sound an odd thing to say when O
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Feeling incredbly loved by all those around us 🧡Here are just a few pict…
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Their biggest supporter 🧡 and advocate 🧡Today Monday 9th June …
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Batten Disease
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Batten Disease Program
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choc.org
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