Watch as mother makes impassioned plea to Sunderland Royal Hospital to secure funding for treatment she hopes can prolong her baby's life

Mum Chemi Lewis believes the treatments her baby son Grayson had been receiving were making a difference.

Transcript

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 £150 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 £40,000.

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)