Twins Toby and Corey and sister Izzy all have the rare and fatal condition juvenile Batten disease (CLN3). Children affected by juvenile Batten disease experience a wide range of symptoms including sight loss, tremors, epilepsy, problems with balance and walking, behavioural and psychological issues and, as the disease progresses, difficulties with chewing and swallowing. Tragically, the disease is fatal.

There are some treatments which can help with some of the symptoms of juvenile Batten disease, such as seizures. But there is no treatment that can slow the progression of the disease, which is caused by problems with a specific gene and is an inherited neurodegenerative condition.

Action Medical Research is funding research to investigate whether a medicine that’s already used widely to control blood pressure in adults might benefit children with juvenile Batten disease.

http://www.action.org.uk/juvenile-batten-disease

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    15 replies to "Juvenile Batten Disease"

    • AYUBA SAMAILA

      I thank you Dr. Agboya on YouTube for your perfect and honest work. I was able to restore my health and sex life with the help of your herbal remedies. I pray that God gives you more wisdom to continue your perfect works to help the innocent from the hands of genital herpes and HPV..

    • AYUBA SAMAILA

      I thank you Dr. Agboya on YouTube for your perfect and honest work. I was able to restore my health and sex life with the help of your herbal remedies. I pray that God gives you more wisdom to continue your perfect works to help the innocent from the hands of genital herpes and HPV. #dragboyaherbalhome .

    • AYUBA SAMAILA

      I thank you Dr. Agboya on YouTube for your perfect and honest work. I was able to restore my health and sex life with the help of your herbal remedies. I pray that God gives you more wisdom to continue your perfect works to help the innocent from the hands of genital herpes and HPV..

    • TyrekeCorrea

      The boys' sister would know more than is indicated here.

    • TyrekeCorrea

      The way mum speaks, the expression on her face, you'd think she thinks this is funny.

    • Amber Rostoll

      there is experimal treatment now for batten disease

    • Coreena Albaugh

      I lost both of my sisters to Batten Disease. Audre died in 2014 at the age of 19, and Alex died this past February at the age of 21. They both had Juvenile. I have since become an advocate for Batten Disease. And, I'd like to say, I understand what it's like. If anyone wants to talk to me, I am always open.

    • Lu Geiger

      there's a 1 in 4 chance they'll pass it down to their kids, they hit 3 in 4 🙁

    • Naila Khan

      Your story is same as mine same feelings I have to go through. My two son suffering from batten disease. Batten disease ends in very sad way.my one of son passed away. Life changed for ever

    • PigInHumanForm

      I lost my brother to Juvenile Batten Disease or (''Spiel Meyer Vogts'' In norwegian) in February. He was only 20. It's such a horrible disease, and even though you know its fatal. You can never prepare yourself for the day it actually happens. The day they pass. I wish you all, all the best <3

    • roarnoroar

      tremors seizures sight loss co-ordination

    • Alex Emily

      I know them

    • TyrekeCorrea

      All three of the kids have Batten Disease? I doubt it. The incidence is never that high, even within within the same family. Either you got saddled with this mess via genetic engineering (IVF?) or at least one of these children has a brain tumor. Misdiagnosis hurts people by endangering health and wasting opportunity.

    • Lori Jeffrey

      i hope they find a cure

    • Simon Newman

      Good God. I'm looking at my healthy kids and I feel like crying.

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