Support termilly ill Samuel make memories

Samuel was 18mths when we finally got some one to listen as he couldn't sit from a lying position we got duchenne diagnosis about 6wks later. Samuel didn't walk until 2.5yrs and at 4yrs has already lost that ability. He has been in a power chair for 2yrs now and is on the surver end of the scale. He has under gone many tests to figure out why he deterating so quickly. 18mths ago sam stopped eating and drinking so had a ng tube put down but as it became clear very quickly that this was what Samuel would need life long so Sam had a operation to put a feeding tube in his tummy and at the same time he had his tonsils and adenoids out and grommets put in. He is now 90% tube feed and is mobile about 90% of the time can still not walk distance can walk about 50 steps before wanting to be lifted he is almost completely unable to do any steps at all he is now slowing down with walking and doing a lot of falling now and requesting his chair more and more each day we are now waiting for a second opinion to figure out if there is anything else due to the lack of muscle in his upper body it is share determination that he can even walk he can bearly handle 2 half days at preschool and half day at therapy per week makes him fatigued very quickly no matter what the problem he is put with he still keeps on smiling.

Samuel has an older brother who has Globsal Developnental Delay. Due to being behind in learning he is very full on struggles to concentrate at almost 6yr old we are waiting for a refural for peads again as he has a few things going on. Lukas has sever behaviourial issues due to GDD and this is extremely hard to manage alongside Samuel with his needs. Caring for these two boys and their sister is a full time job, it's relentless and help is hard to get. Angela can not work as life revolves around hospital appointments, therapy sessions, school meetings for Lukas and tube feed schedules for Samuel. Samuel is deterioting faster than most Duchenne boys, his specialists are stumped & don't know why. Samuel is on a limited life and exactly how old he will get to us unknown but getting to 16 would be a mirical. At the rate of decline it's highly likely to be a lot earlier. This is devastating news :(