Juvenile CLN3 (Batten) disease

We provide world-leading support for people with juvenile CLN3 (Batten) disease, which is a rare, life-limiting, degenerative condition requiring specialist nursing services.

People with juvenile CLN3 (Batten) disease are born apparently healthy, but subsequently lose their sight and develop epilepsy, with a gradual decline in physical and cognitive abilities.

Our work contributes to the global understanding and research around CLN3 disease.

Pam and her son, Robert

Living beyond expectation

“We know in our hearts his life was extended by the level of expert support and the beautiful setting at Heather House. Because of SeeAbility, we were given more time with our son than we ever dreamt possible, and we can’t thank them enough.”

Pam and Gary - Robert's parents

Pam and her son, Robert

Heather House

SeeAbility’s Heather House is a world-leading specialist nursing care home, which offers a high-quality service for people with juvenile CLN3 (Batten) disease and other complex life-limiting conditions.

Heather House is unique in caring for people in the later stages of juvenile CLN3 (Batten) disease. We’ve developed specific support strategies for managing epilepsy and many other areas of people’s care. As a result the life expectancy for the individuals here is higher than the international average.

Our team consists of an adult neurology consultant, a GP, nurses (both general and learning disability fields), speech and language therapy, physiotherapy, rehabilitation practitioners for visual impairment, our team of carers and day service staff and the families of the people we support. We also have internal access to personal behavioural support practitioners and, through our GP, to psychiatric services. 

Our multidisciplinary team work together with each person to ensure their symptoms are supported, with knowledge of their condition and with empathy, to enable the person to enjoy the best quality of life possible according to the progressive nature of their condition. 

Heather House

A world-leading specialist nursing care home offering a high-quality service for people with juvenile CLN3 (Batten) disease and other complex life-limiting conditions.

Juvenile CLN3 (Batten) disease outreach programme

We regret to inform you that the outreach service, funded for 1 year, ended at the end of March 2021.

Sarah Kenrick, who held the post of Outreach Liaison Nurse – juvenile CLN3 (Batten) disease has taken an advisory role (voluntary) with the Batten Disease Family Association (BDFA). Sarah remains committed to supporting children and adults affected by Batten, their families and associated professionals.

If you do require support from Sarah, please contact the BDFA Family Support Officers Wendy Thompson or Cathy McSweeney at support@bdfa-uk.org.uk and they will liaise with Sarah.

Free resources

We have written some guidance for families, carers and associated professionals. You can download these below and if you have any more questions, please feel free to contact Jacqui Bradley at J.Bradley@seeability.org.