If she made a tiktok account for awareness, fine. If she made an account explaining his challenges and limitations, how he is expected to deteriorate and the different ways this will present, such as eyesight, hearing, spine deformity, lung function.. again fine. Even if she was open and honest and said "this is my boys reality, and there's limitations to what we can do for him, but what we want to do is make some bucket list dreams come true...get him to spurs, meet his favourite player, have a dream holiday.. " I think the wider public would be absolutely fine with it and be open to donating to give him a boost and support him to make the most of his circumstances.
Telling the world he's only got til now to raise 2.5M, or he can't be saved, that his life depends on it, with all the discrepancies that are coming to light. Pushing it on news channels, to the media, all with the same narrative that his death is imminent and will be painful and undignified while he mobilises well, up and down the stairs, has a fluctuating need for oxygen but largely isn't on it and plays on his computer consoles happily singing, all the things that would put his body under exertion but doesn't seem to? No. Not ok.
I follow a little girl who isn't expected to make her 2nd birthday, her condition is grave, her parents are facing what would be everyone's nightmare. Yet they only seek to raise awareness. They Meet her needs financially themselves via working, ask for nothing for them or even her. The only thing that they have asked for was an Amazon wishlist that benefit the hospice and hospital their baby attends and all the gifts were reasonably priced, carefully chosen, for the benefit of other children so they each could have a nice Christmas. That's what it's about