Zak undiagnosed condition

Zak is my little grandson who was born normally but did not smile and reach his milestones. As time went by we were told he had some problems with his limbs being stiff and head lag which we were not aware of. Also he failed to thrive and had tears roll down his face everytime he had his bottle. He also did not seem to be happy and never really babbled or did anything apart from stiffening. It soon became apparant that he was not like other babies when they did lots of tests and brain scans it revealed he had an abnormality in his brain hippocampus. However this did not supply any answers other than more blood tests and spinal taps and mri scans. He was weaned and seemed to love his food but medics then advised he should be nasal gastric fed by tube as his eyes watered and they thought he was silently aspirating liquid. However neurologists thought it was his saliva and tear nerves working together, but they none the less stopped his only pleasure for safety and he beacame peg fed ( through stomach)after months of what seemed to be torturing him putting the tube down his nose numerous times a day. Zak has been put through lots of tests and still we have no answers. He has fused bones to his arms which were just picked up at 2 yr old, which means he cannot use his hands to full rotation. We are now told he is allowed to eat but cant and doesnt, as he has developed a phobia and an aversion to food which makes him reach when he smells food.He cannot roll over or crawl but He loves to be on his feet when held, but has no balance so cannot walk unaided. However he has learned how to step to where he wants to go. He has some  behavioural habits which indicate autistic traits and doesn't like to play with other people and most of the time is in his own little world with no understanding of everyday normalities, and recognition of people around him. Zak is a gorgeous little boy, now almost 3 yr old, but with the mentality of a baby and does not talk or babble but can make noises.. he always knows what he wants and has a sweet little noise he makes when he wants something. Zak has been taken to Great Ormond Street and is on a DDD Study with lots of professional people at a loss to Zaks condition to date. Zak goes to a special nursery 2 and a half days a week, but has very complex needs and cannot tolerate heat or certain conditions. He has grommits in for hearing and glasss for sight as he is very long sighted. He has a 6 yr old brother and a 7 month old sister. However Zak needs equipment like special outdoor walkers and pushchair and toys that he may enjoy, which are limited in supply. We are currently awaiting a biggerhouse for Zak and his family to allow Zak more space and a hopefully a garden he can have with more equipment for him to accomodate and a light sensory room with adaptations to be made when the council can rehouse the family to accomodate his monthly supply of feeds etc. I would like to be able to open an account for Zaks future as he doesnt have a lot of luck at the moment and we do not know what his future holds for him, so we would like to be able to give Zak everything he needs and enjoys,without the worry of Zak having to make do. What we do know is that Zak loves music and sensory and this money could go toward his little pleasure when we have a house in the near future to build a room with everything in the room just for Zak, and to keep him safe.


Denise Jackson
Houghton Le Spring, North East England, United Kingdom

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