Please help Liv who was diagnosed with Noonan’s Syndrome

Liv was diagnosed with Noonan’s Syndrome, none of which their parents had, it is simply something that happened inside her, and it’s a very rare version of this, she is barely crawling yet, can’t eat by herself, can’t say anything, and she is turning four in August, so they are both beyond exhausted and filled with sadness still, they don’t get the help they very much need and haven’t had any breaks for four years, no one in the family on both sides can not manage to help her or take care of her for more than a few hours a day, she is getting heavy but we still have to carry her all the time everywhere! She also gets sick easily because she can’t move like normal kids her age, and we have a lot of hospital visits, 4 x drainage in her ears, couple of teeth operated out, constant checkups at the hospital with kids who have rare diseases, physiotherapists and on and on… but we keep optimistic as much as we can and train her daily but obviously, it’s hard, hardest ever, never thought this would happen, but we also never knew or anything they could have done! And she still never sleeps properly at night so we are also in a constant state of jetlag for four years now… I had to close my company, have no work at all, spent all my savings on this, and am now on unemployment benefit and we barely make it, we are fighting to get proper help and hopefully, it will happen soon, we are in deep crises and depression and also seeing proper help now… it’s been a very lonely few years, just after two horrible years with Conrona crap and the year before that with my dad dying and having to sort that out alone for a year…