Mum Chemi Lewis believes the treatments her baby son Grayson had been receiving were making a difference.
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00:00 Okay then Shemmy, just start by telling me what Grayson's situation is in terms of the
00:06 treatment which he had been getting which was no longer available.
00:13 So it helps stop, well helps build an immune system for Grayson to constantly stop getting
00:23 infections and to help fight it off.
00:26 I understand it had been trialled for 10 days, did it make a difference?
00:29 It did yeah, we weren't in and out of hospital, he did manage to stay out of hospital for
00:36 about 2 weeks.
00:38 So what's been said by the hospital as to why it's currently stopped?
00:42 That there wasn't enough evidence to prove that it would work and that's all basically,
00:51 that there wasn't enough evidence to be able to fund the medication.
00:55 I understand you've done some of your own research though and you've found examples
00:59 where this treatment has worked?
01:00 So I did do my own research and I did find that there's 2 other boys abroad with the
01:08 same condition on the same medication that we were hoping for Grayson and one is now
01:19 16 and one is now 18, they're both brothers.
01:24 Without any intervention, what is Grayson's prognosis without any intervention?
01:31 Without any medication or anything like that, he preferably wouldn't live to the age of
01:38 6, he would pass away, one of the infections would end up killing him.
01:47 So what is your message firstly to the hospital but also anybody else who may be able to help?
01:53 Just to be able to reconsider funding Grayson.
01:58 Grayson is a happy little boy as you can see and he does deserve that extra bit of life.
02:09 If you had to go private, I understand you can buy this treatment privately but it's
02:14 ÂŁ150 every 10 days, is that right?
02:16 It is yeah, which adds up a lot, especially because it is going to be a medication that
02:22 he is going to have to be on for the rest of his life, that obviously does add up and
02:30 I think when we looked at just for 10 years to be able to get him to 11, it's going to
02:36 cost just over ÂŁ40,000.
02:39 So if anybody can help, get in touch?
02:42 Yeah, anyone in fact can help, please get in touch.
02:50 There's a doctor.
02:54 Well.
02:56 Thank you.
02:59 (chips crunching)