Fight Like Jagger

On December 20th, 2016, our son, Jagger James Null, was diagnosed with Batten Disease CLN1. Batten Disease is an extremely rare and fatal autosomal recessive neurodegenerative disorder. Prior to this diagnosis, Jagger was diagnosed with severe ADHD, Oppositional Defiance Disorder, Conduct Disorder, Lack of Impulse Control, Dyspraxia and an Intellectual Disability. We now know that these are all symptoms of Batten Disease. At 5 years old, Jagger started having seizures and within 6 months he rapidly lost 95% of his eye sight. He had 2 MRI's within 4 months and you could see his brain deteriorating. Right now, his fine and gross motor skills are at a 2 year-old level and we continue to watch him go backwards. He has stopped learning and have become increasingly mor ciloent, hitting, kicking, biting, as the dementia is starting to set in. He falls all the time, which happens before Batten kids stop walking all together. Over time his body will stiffen and weaken. He won't even be able to hold his head up. He will be bedridden with a feeding tube. He will possibly need a pacemaker and he won't have any way of communicating. As he loses his abilities, we will need more and more medical equipment to take care of him including home nurses and hospice. Joe and I are devestated knowing there is nothing that can be done to save our son and we will lose him. The unbearable heartbreak will come as we watch our little boy deteriorate slowly to his death. Please pray for us as we not focus on the bodies deterioration but instead put all our effort into loving his soul. I beleive the true miracle is that Jagger has blessed our family and will never truly die. He will go straight to Heaven and we will be together for Eternity. Anything helps. Thank you so much for your time. God bless you all.