Tylers 22q syndrome fight

Hi everybody. As you know in January last year we welcomed our son Tyler in to world. And it has been quite a long battle since then. Tyler has a genetic disorder known as Digeorge Syndrome, or otherwise known as 22Q deletion syndrome. Due to this it means he has a long road ahead of him, and may have an endless list of problems. Tyler is fed full time by an NG tube, as well as now having suffering from sleep apnea. We have been lucky enough to receive help from the Jack&Jill organisation by being granted two nights a week where we have nurses to look after Tyler whilst being monitored. The HSE granted us nurses 5/6 months ago, but so far have unable to come to an arrangement or find nurses, & have refused to use Jack&Jill nurses which have been offered as a solution. Unfortunately it is quite a high expense to hire nurses for the remaining nights, which we just can't afford, & my partner and I would greatly appreciate any help.