Three Canterbury mothers join forces to raise awareness of a rare genetic disorder called BPAN, which affects their children's neurological development.
00:00We don't ever really look at him on a daily basis and be like, oh, he's got B-Pan, all this stuff's going on inside of him.
00:07We don't ever do that because he's so happy.
00:09For Emily, every day is a race against time.
00:13Her son Bertie has a rare genetic disorder, so rare that under 50 families in the UK are known to be affected.
00:21With no current cure, children with B-Pan will have problems with movement, speech and delays.
00:26The disorder can also lead to symptoms similar to Alzheimer's and Parkinson's, often causing premature death.
00:35But for boys, life expectancy can be even lower.
00:39I think we have got a very good advantage because our kids are still quite young.
00:45I know that the second degree normally happens around 16, 17, isn't it?
00:52And so, yeah, we have still got time, but it's just funding.
00:55Like, that's why we just need the funding, do you know what I mean?
00:58Because, like, time does, it does go quick as well, do you know what I mean?
01:02Due to such low numbers of those that are affected, awareness is limited.
01:07But there is hope.
01:08Action for B-Pan is a charity established by Kelly and Nicole, who've come down to Bertie School in Canterbury,
01:15hoping to shine a light on the disorder and raise money for a cure.
01:19In the next couple of years, we need to raise £2.3 million, which is an enormous amount.
01:25But, you know, in the last eight months so far, we've actually managed to raise £100,000 since we've been going, which is incredible.
01:32But when you compare that to the £2.3 million that we've got to get to, you know, it doesn't feel so good.
01:39But we're all completely dedicated, you know, we spend as much time as we can around our family commitments, trying to make it happen.
01:47And the wider that the message gets out there, the more and more support we're getting from, you know, just people that want to help.
01:54Through a family friend, Emily has been able to set up a charity football match with Sturry FC, which is happening in November.
02:01This will add to the £100,000 that they already have, helping them reach their goal of £2.3 million,
02:07which will fund the next and hopefully final stage of the cure.
02:11I asked Nicole what the next steps would be if they got the money tomorrow.
02:14So little mice that have B-Pan and they're actually giving them the gene therapy and curing them to collect all the data about how to transfer that then into a study for, a human study for the children.
02:30And that would be next steps is to get that going.
02:35And then obviously the kids can have a chance, you know, that's going to be their greatest shot, really.
02:41Gene therapy was, yeah, it'd be great.
02:47Although £2.3 million is a large goal to meet, the women here feel confident that they will reach the finish line, one fundraiser at a time.
02:56Yeah, it's just trying to reach out to everyone just to be like, please, please help save our kids.
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