James Young’s fight against battens disease

Our little boy James Young has been diagnosed with a very rare condition called CLN2 disease (battens) which primarily affects the nervous system, this usually includes recurrent seizures, loss of mobility, vision loss, loss of speech, develop breathing problems and typically do not make it to there teens. Great Ormond street hospital have been drug trialling a treatment since 2014 and this has now became available on the NHS, due to families before us fighting to get this approved. To get this treatment for James we need to travel to Great Ormond Street in London every 2 weeks to get the treatment infused into James brain which will prolong all symptoms until we can hopefully find a cure one day. James is honestly 1 in a million, not just because he’s our boy and the best little brother to his sister, he’s just like any other 4 year old he knows all the dances to happy feet and loves the jungle book and honestly sometimes thinks he’s a dinosaur, his sense of humour is something else, for what he’s going through he just keeps smiling, keeps fighting and proves to us everyday how strong he is and we want James to keep fighting and proving to everybody he can overcome this until we find a more permanent cure for him. 
As a family we just want to say how grateful
and thankful we are to everybody who has donated and is still donating to help James it’s been amazing the response we’ve received andwe are so overwhelmed, we just want to keepgoing and raise as much awareness as we can.