What is wrong with Ryan?

That is the question we get asked a lot....

Ryan has "partial Mosaic monosomy 21" which means hes missing one of his 21st chromosomes. Now, this genetically is extremely rare, we've been told, hes definitely the only one in the UK with this type of genetic problem, possibly the only one in the world as well.
This affects Ryan in a lot of ways, he cannot and doesn't know how to feed from a bottle let alone take any solids, so he has been tube fed via nasal gastric tube since he was newborn. He has increased muscle tone in his arms and legs, Ryan's genetic condition can also make him function as a Cerebral Palsy. He cannot and doesn't no how to sleep, only with calpol, He has seen a neurologist who has said he does have some serious neurological problems, his connections in his brain are not firing properly. Ryan is also on medication for reflux, and has been since birth.
A trait of the monosomy that is very important to remember, is what may work one week for Ryan may not work the next, so we have to keep very on top of things.
Ryan is trying so hard with everything, hes doing all he can to sit up and crawl, but with no success yet, Ryan is so beautiful considering hes suppose to be dis-morphic, he is our precious angel and he is doing well at the moment considering.