Thank you for following our brave boys journey �
Love Andy, Sheryl & Jeffrey # # # Jeffrey has recently been diagnosed with Late-Infantile CLN2 disease also known as Battens Disease. This is a very rare genetic disease which is incurable. He was diagnosed on Thursday 6th May 2021 after battling with what we thought was epilepsy for 18months. Battens disease is a neurodegenerative disorder which will affect him in many ways. 5-6 children are diagnosed each year in the UK. It is estimated there are 30-50 affected children in the UK. Children are healthy and develop normally for the first few years of life. Towards the end of the second year developmental progress slow - speech delays. They develop epilepsy which is the first definite sign. They become unsteady on their feet with frequent falls and gradually skills such as walking, playing and speech are lost. Age 4-5 the children usually have myoclonus jerks of their limbs and head nods. Eventually sight is lost, speech, control of the body, ability to to chew and eat which means a feeding tube will need to be fitted, dementia and then ultimately the loss of life. Children diagnosed have a life expectancy of 6-12 years old. This page is a non profit page about Jeffreys Journey, and to hopefully help raise awareness of this devastating disease and the possibility of getting a treatment which won’t cure him, but may help slow the regression. Thank you for following him in the next steps of his journey �
Love,
Andy, Sheryl & Jeffrey # # #
