Juvenile Batten Disease

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.
www.action.org....
/ actionmedres
/ actionmedres

[@Koda_Grey]

I lost a classmate and good friend to Batten’s Disease. Both of his other siblings had it as well. I witnessed his mother go mad and all of them having to move in with their grandparents. It was devastating. My most precious memory is his grandma telling me he remembered who I was and asking about me in his final days. I feel so honoured.

[@piginhumanform28]

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

[@ActionMedicalResearch]

Hello Heather - we are so sorry to hear about your loss. It is a cruel condition and we hope that one day we can help find answers. Thank you so much for getting in touch and sharing your experience with us. Sending you our very best wishes x

[@piginhumanform28]

@@ActionMedicalResearch Thank you so much

[@angeladutchlady6464]

@@piginhumanform28 Also lost my brother due to this absolutely horrible disease at age 21.

[@judithwerner5301]

All those neurological diseases are horrible. I pray for a treatment and eventually a cure.

[@simonnewman7085]

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

[@rabbit30060]

thanks so much on behalf of my granchildren

[@jamessveinsson6006]

I’m here in March 2024 because of the article I read about a young boy that has this it was a Fox News article online. I’ve never heard of this disease before ever took me straight to RUclips and I came across this. I feel sorry for you guys and I prayed I hope you’re doing well. I know it’s been seven years since this article.

[@rogerkreil3314]

I have Moebius Syndrome. It is a rare neurological disorder. I am missing my 6th and 7th Cranial Nerves. They are responsible for eye movement, facial expressions, and speech. I never heard about Juvenile Batten Disease either. I was encouraging people to share their colours on February 29th for Rare Disease Day. So that is collectively our day to shine. And Moebius Syndrome Awareness Day is on January 24th. You can wear purple to show your support! 😀💜😀💜😀💜😀💜😀💜😀💜

[@nailakhan987]

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

[@nailakhan987]

If you Google batten disease Daniel and Usman battle you will see my family story

[@ActionMedicalResearch]

@@nailakhan987 so sorry for your loss. Hopefully one day we'll find a cure.

[@KQuinn672]

😟😰

[@louisgabriel9155]

My partner has Early Onset
Dementia.It's a very cruel disease no matter rhe age but
a young child having it is more than tragic😢 I'm praying
for you and yours.❤

[@feyamnazarova1410]

@@nailakhan987

[@joagate3259]

Wish we knew how everyone is doing now. God bless.

[@susanniciejewski5447]

My 8 year old precious Grandson has CLN3 Disease. Awful , heartbreaking and so frustrating that their is very little funds going towards all Rare Diseases.😢

[@KQuinn672]

So sorry 🥺

[@pinausok]

Life is so unfair..

[@jenniferbowie2773]

Wow and it’s not like you can say ok well we won’t risk any more children cause they didn’t know until they had grown some and they are born normal this is heart breaking!

[@lugeiger4924]

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

[@FluffyEclairs]

That's about 1.5 percent. ☹️

[@lorijeffrey3454]

i hope they find a cure

[@joan19855]

How are they now? Hoping they are all fine🙏

[@amberrostoll3772]

there is experimal treatment now for batten disease

[@susanhicks255]

Who carried the gene, Mum or Dad.
Just starting out in life. Cruel situation.
Bless you all. ❤❤❤❤❤❤

[@janagreenwood2475]

Both parents carry the faulty gene that affects the child. The other children might be carriers

[@janagreenwood2475]

We just got the news that my son has juvenile batten disease. I'm broken

[@Elisetchi]

tremors seizures sight loss co-ordination

[@ziggylaurie2268]

Tragic!!

[@bebekingg]

I don’t know if I have this or not. I’m having eyesight problems and memory/speech issues, (eyesight problems since around 8 to 9) and I’m really scared right now.

[@imawardy]

💙💙💙💙💙

[@alexemily5945]

I know them