baby r sma support and awareness

Our son rimari was diagnosed with sma type 0 the rearest form of the genetic illness he was born on 10/04/2016 he had to be resuscitated it took 18 mins ever since he has been on a ventilation system to keep him alive he needs 24 hr care and support we are trying to raise funds so we can stay with him always as hospitals dnt provide us we have been told he wont live very long he wont make it to 1 year old so we want to be with him as much as we can so trying to rasie funds to stay at hoshospital with him and can spend as much time with him careing for him as possible and we have been told by the hospital which he is in that it is not the right place for him but they refuse to move us to a proper hospital which can provide the level of care he needs to live if u can help in anyway no matter how small or support or any other help we thank you rimari s mum and dad thank you the funds will be used for to pay for me and partner to stay with rimari and travel where ever he goes accommodation for dad and mum to be with him always when needed food special sensory toys for rimari and any other help we may need in his life . Sma type 0 is rare rimari was born with it only 194 babies in the uk have ever been born with this type there is no cure for it most babies dnt live very long its spinal muscular aprothy the brain and from the neck up work perfectly fine like any normal child the rest of him cant move just minimal movement which will slowly fade over time as the genes that control this slowly fade and die away his face and eyes will stop moving and slowly lose all abilities to do anything and pass away he also is highly prone to infection if he gets a cold or anything it can quickly and rapidly become worse and kill him fast rimari was also born with a hole in his heart a big one at the top and a small tear at the bottom    ‌