Help Fund the ONLY Treatment for Children with FATAL Batten Disease

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 Batten Disease is a neurodegenerative life limiting condition. Children appear healthy at birth and symptoms for CLN2 Batten Disease begin between 3-4 years old. Children lose the ability to walk, talk and eat. They lose their vision completely and develop childhood dementia as well as uncontrollable seizures. The disease progresses rapidly with children becoming completely dependent on parents/carers by the ages of 5-6 years old. The life expectancy of a child with CLN2 Batten Disease is between 6 and 12 years old.

However there is hope, a select number of children in the UK have been receiving a drug called Cerliponase alfa. This drug has shown to slow down the progression of the disease and in some children even stabilise it.  Children aged 7 & 8 years old who are receiving treatment are still able to walk and talk, whereas those who do not receive treatment will lose these skills around 5 years old. . This treatment is currently available to patients in Europe but is not currently funded by the NHS in the UK.

The drug is currently going through the NICE process and currently NICE and NHS England have made the decision not to recommend this treatment be available children in the UK with CLN2 disease.

There are currently 4 children in the UK who have no access to treatment and there are 10 children who could potentially be left without treatment if the treatment is not recommended by NICE.

Lucy Carroll who has 2 children receiving treatment says: 'We are extremely disappointed and utterly heartbroken with this decision. We are witnessing first hand the positive impact the treatment is having on both of our children. The process in which these decisions are being made is painfully slow, whilst children in the UK are left suffering yet other countries are providing treatment. We now need your help and support to allow us to be the voice for all children with CNL2 Batten Disease and get this decision changed.' 

Gail Rich, a parent of 2 girls receiving treatment says: "We cannot express how devastated we are by the news that the NICE committee have made the unthinkable decision not to recommend this treatment be available children in this country on the NHS. This decision is cruel, unjust & simply wrong. This treatment works. It has been proved to work."

All of the amazing children currently receiving treatment around the world are living proof that this treatment works. We only have to look at our two daughters to see that this treatment works.

How can they possibly say no? Every child deserves a chance. This treatment should be available to children in this country.

Knowing it is now a recognised treatment in other countries across the world proves they are wrong & would be wrong to deny our children in this country, access to something that has been proven to work.

Please sign this petition Together we WILL make a difference.



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