- 2 months ago
Catch up with all the latest news from across the county with Chloe Brewster.
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03:50other but also is there anything we can do to help people over there we're just waiting for
03:57further confirmation between um different community um leaders to to coordinate a sort of fundraising
04:04or anything we can do to express to nepal that nepal you're not alone um we stand together and
04:12we are um we're here um and and to send a strong message nepal to stay strong really
04:19well andy burnham said that he's going to pledge some money towards aid efforts in nepal do you do
04:25you back that absolutely because as i said nepal is a friend of the united kingdom and i think um
04:36i
04:37would heart heartily welcome this uh initiative from the government from the prime the honorable
04:43prime minister and i would also urge all the nations across the world to join hands at this
04:50particular moment in time to show solidarity and support in whatever way possible to nepal and the
04:56people of nepal a dine and dasher who fled a popular kent restaurant without paying has been handed a
05:03fine of almost two thousand pounds by a court johnny delaney was captured on cctv which you can see on
05:09screen now leaving stubs in ashford without paying the 250 pound bill footage obtained by
05:15kent online shows him walking across a car park with one of the youngsters before jumping into a car
05:19and driving off he was sentenced at canterbury crown court to a 12-month community order made to pay
05:25back the cash to the restaurant as well as payout court costs more than 5 000 young people have been
05:32vaccinated against meningitis b in kent after a one-off program for university starters health officials
05:38began offering the jab for free in june to year 13 pupils and students aged between 18 and 25.
05:45it follows the meningitis outbreak in canterbury back in march but students here are being reminded
05:50that the jabs are most effective when taken in two doses four weeks apart so students are being
05:56encouraged to book in to finish the course well i don't know about you but i was pretty glad to
06:03see
06:03the rainy weather this morning although i did have to dust off my umbrella but let's see if the rain
06:07will continue over the coming days
06:15there's going to be some rain in medway tonight and it will be warm and cloudy across the rest of
06:19the county of highs of 18 degrees in many places going into tomorrow it's much the same with highs
06:25of 19 degrees and lows of 18 degrees in dartford medway and royal tunbridge wells it will warm up
06:30slightly going into tomorrow afternoon with temperatures reaching 23 degrees in canterbury and
06:34lows of 21 degrees in royal tunbridge wells and dover looking towards the weekend saturday sunday and
06:39monday looking like 22 degrees on saturday 23 on sunday 22 on monday rain sticking around for saturday
06:53for families living with rare diseases there is no simple routine every day can mean caring for a
06:59child whose condition is unpredictable while campaigning for awareness fundraising fundraising
07:04for treatment and fighting for support the special coming up after this program is going to be full of
07:10all of that over the past few months alone kent online and kmtv have reported on a number of
07:18children in kent living with rare diseases each condition only affects a handful of children but for
07:24the families living with them the impact is anything but rare with no cure for many of these conditions
07:30their mothers have been campaigning for greater support awareness and funding for trials all while
07:35navigating the upsetting realities of day-to-day life with the rare diseases a lot of them
07:40you've only got a very small number of people who are affected so if you're a company devising a new
07:45treatment to get your money back you've got to charge an awful lot of money so they're not making
07:51excessive profits but they have this challenge of developing a drug from scratch going through
07:57all the testing and the approval that they need and then passing out to a small number of people
08:02compare that with a very common disease there's a very easy way to get your money back and therefore
08:06the costs are much lower i went behind the scenes with one of these families to find out what life
08:11is really like to show the challenges that rarely make the headlines and the battles that continue
08:16long after the cameras have been switched off ready good boy good boy what kind of support do you get
08:29um i don't really the question is when a disease is rare does that mean the children living with it
08:35are too rare to matter you can catch that special report just after the break now a medway boxer is
08:43ready for the fight of his life this weekend he faces croatian hergovic for the international boxing
08:49federation heavyweight world title on saturday moses italmer who is just 21 years old will become the
08:55second youngest heavyweight champion in history after mike tyson if he wins he is a favorite of bookies
09:01backing the former saint mary's amateur boxing legend prince nasim hamed has described italmer as a
09:08million times better than anthony joshua and tyson fury a business owner from the isle of sheppey has turned
09:15her passion for fashion into a full-time career and is now inspiring others across kent to do the same
09:21chloe love it runs love it or list it a clothes reselling business she started as a hobby before
09:26taking it full-time just four months ago now she's helping show how a love of fashion can be turned
09:31into a successful business justine larder has a story have you ever thought about turning your side
09:37gig into a full-time job well here in sheerness on sea chloe love it's clothes reselling side hustle
09:44has moved from second-hand retailer vintage to this building right behind me let's go take a look
09:51at love it or list it you can sell your unwanted clothes for cash these clothes are then sold online
09:58either individually or as part of bundles i think it's more than a full-time job like the it like
10:05since
10:05being here within the four months it has just gone crazy like my earnings are from like 400 to like
10:10two grand a day sustainable fashion is a growing industry with barclays reporting in april this year
10:18but 38 percent of uk consumers bought from a resale platform in the last year as well as sustainable it
10:26can be a more affordable option for customers too i've had a wedding dress where a lady went to get
10:33married in vegas that she paid hundreds for i put it on vintage i think someone got it for like
10:3750 quid
10:38so again like someone's then maybe getting married this for the second time and they've got a dress
10:42off of vintage for such a low cost chloe has built up a community of sustainable fashion enthusiasts on
10:49her social media pages encouraging others to get involved in the side hustle too i've had a lot of
10:56people reach out to me and say that i've really inspired them like even someone messaged me the other
11:00like their 16 year old daughter's been following my journey from when i came here and he's actually
11:04started taking up what i'm doing but social media hasn't always been a beneficial place for chloe
11:11having a presence online has exposed her to some negative comments from other social media users
11:18i think it's a reflection the comments that people are making a reflection on their own life
11:24if someone's really happy and content within their own life they've got no time to leave a horrible
11:29comment about someone else but i would i would never do that in spite of this chloe is staying
11:35positive and showing that turning your hobby into a career can be done we're in 2026 like you can make
11:41money from anything like as long as you're passionate about it you know that you want to do it go
11:46for it
11:47and her business is only growing more as love it or list it is due to move to a bigger
11:53unit soon
11:54justine larter for kmtv news in sheerness on sea much more after this short break
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15:24Hello and welcome back to KMTV.
15:26For families living with rare diseases there is no simple routine.
15:30Every day can mean caring for a child
15:32whose condition is unpredictable –
15:34while cataloging for awareness, fundraising for treatment, and fighting for support.
15:39For many of these mothers it means raising hundreds of thousands of pounds for research and
15:44and potential treatments, while questioning why something that could change their child's
15:47life is so difficult and expensive to access.
15:51Kristin Hawthorne has been finding out what life is really like for families living with
15:55rare diseases in Kent.
15:57Internationally, if you put them together, the numbers will be larger, but actually in
16:01terms of devising a new treatment, they will still be low, often slightly below the breakeven
16:08point a lot of the time for the companies.
16:10So there is no approved treatment, but there are treatments that have previously been trialled,
16:15that have proven to be incredibly effective, but have run out of funding before they've
16:21reached the approval stage.
16:22They ran out of funding for one cure, so they couldn't move forward, and it just scared me
16:29because there isn't a lot of, like a lot of the children that have got B-PAN or the young
16:34adults or whatever. This cure is only from 0 to 25 years old, but anyone that is already
16:43in the second degree is classed as incurable. So if when Bertie gets to the second degree,
16:49he can't have that gene therapy because the gene therapy is to stop the second degree happening.
16:53Navigating mornings with multiple children can always be a challenge, but add in the fact
16:58that one of those children has a rare disease and the sunrise brings a whole host of new
17:02battles.
17:03From the fear that the disease has progressed overnight to managing medications and campaigns,
17:09fighting on can be difficult for the whole family.
17:11Emily has five children. Two have ADHD and one has ADHD and Oppositional Defiance Disorder.
17:19Then there's four-year-old Arabella. Bertie, who's five years old, has B-PAN, which is a rare
17:24genetic disease that leaves his future uncertain. It requires constant care and strength, both
17:30physically and mentally.
17:32It's 7am bright and early here in Canterbury and Emily has invited me down to her house
17:38to see her morning routine with Bertie. She says the process can be quite a challenge as
17:43their home isn't accessible. Let's have a look.
17:49Bertie can't walk without support, so his morning starts by waking up and carried down
17:53the stairs.
17:55Ideally, we want to get a bed that's really high, but has all the bits around it, but
18:02we can't fit that in there at the moment, so we're waiting at the moment for a four-bedroom
18:06house from the council.
18:14As the days pass, this becomes more and more of a challenge for Emily.
18:24Oh, that was a task, wasn't it?
18:28Then, on to breakfast.
18:31It's mad. Like, he had an EEG. When he had his EEG without medication, he was having
18:38like 50 to 60 silent seizures that were going on in his brain, but not physically. You're
18:44going to eat your pancake? Hello Bert. Clever boy. Clever boy. Yay. Hello Bertie boy.
18:55And he loves circles, so playing with the plate is also a part of the routine.
18:59He'll pick the food up, go to put it to his mouth and throw it up the floor or throw
19:02it
19:03back on the table because he can't help it. It's like he's got uncontrollable movements,
19:08if that makes sense. So sometimes I'll have to just quickly try and get it in his mouth
19:13so then he can taste it and then he'll be like, oh okay, it's food time now, so then
19:17he'll start eating. You want it off. You want it off. You don't want the plate.
19:24Like any other five-year-old, Bertie loves playing with toys and watching cartoons. But
19:28because his disease is so rare, there's no treatment and as he gets older, getting that
19:33treatment begins to feel more and more out of reach.
19:44Yay! Was that good? High five.
19:50You just lost the sick? You might want me to get him ready.
19:55After a break, it was time for medication and teeth brushing.
19:58I left him in the evening and underneath the... Oh dear. Are you good?
20:07One more. I'm going to do your teeth. Good boy. Good boy. This is horrible, this one.
20:20Yeah, so he has to have...
20:23Just a minute, Albella. He has to have two epileptic medications and one before he's dribbling.
20:33But this Topper, mate, is awful. I've accidentally tasted it before and it's just foul.
20:39Isn't it, bubs? Right, you ready for your tea? Because this is the absolute head. Good boy.
20:45Yeah, so then we get him dressed and I do his medication and that's a fight.
20:49And that is, like, because he's been so strong now and where I'm only small, like, trying to hold him,
20:56we will see.
20:57But yeah, he will try and fight me. And then it's to get all the other children ready.
21:02So the other three, because even though Bert's got, like, complex needs, I've got four other children that all have
21:10needs as well.
21:11Hey. It's hard work. Is it hard work?
21:19I spoke to Emily Moore to find out what kind of support she gets and what she's been doing to
21:24help Bertie get long-term treatment.
21:26During the interview, we were surrounded by the children and you can tell just how busy she is.
21:31At the moment, I'm on TikTok, so I've been, since November last year, I have gone to TikTok to try
21:37and raise awareness about BPAM because I didn't even know what BPAM was.
21:41And through that, I've gained quite, I'm on, like, 60.3 thousand solids.
21:50And through TikTok, I've, like, found so many medical mums that are, like, that are going through the same thing.
22:01So I've got, I've got a mum that's got a child with childhood dementia and she's having to, she missed
22:07human trials and she's now having to pay £1.5 to £3 million for treatment.
22:12Lenny is another child in Kent who has a rare disorder. She has Sanfilippo syndrome, also known as childhood dementia.
22:19Her mum, Emily, has also been campaigning and raising awareness, almost reaching her target of £500,000 for a treatment.
22:26I think there's this whole world of rare diseases that exists that you don't know about until you're in it.
22:31And it is so unbelievably unfair and frustrating.
22:35Every day that goes by is a day too late and we just are in this constant state of worry
22:39that she's going to start regressing.
22:42And the fact that there doesn't seem really to be that urgency from anyone other than the families.
22:50And I'm sure there are people that are working very hard behind the scenes to try and make these treatments
22:54happen.
22:54But it's like, this is a child's life that depends on this treatment.
22:58And there just doesn't seem to be that, that drive from everyone else.
23:03And I don't feel like parents should have to fight for their child's life.
23:07I feel like the system should support that and kind of really accelerate these processes, especially for rapid neurodegenerative diseases
23:16in children like Sanfilippo and like BPAM that need treatment as soon as possible.
23:22Like these, these conditions are very, very quick once they start to decline and we can't afford to wait because
23:32children are dying without treatment.
23:34And the treatments exist, they're on the shelves. And that's so, as a parent, the fact that a treatment is
23:40within touching distance, but my child can't access that.
23:43And the fact that we have to raise all this awareness because no one's heard of Sanfilippo.
23:47The fact that we have to raise all this money because the funding isn't there for rare diseases.
23:51It's just, it's so incredibly unfair.
23:53Why is it so much money?
23:55Like, for instance, Bertie's gene therapy is called Great Ormond Street as a whole for the project, just to get
24:03to human trials.
24:04It's going to cost around £10 million.
24:06And then Action for BPAM, they are targeted £2.3 million by May, 2027.
24:14Um, and BPAM's not waiting for these children to get these funds. Do you know what I mean?
24:20BPAM is like, we've lost, we've lost.
24:23I know, darling. You need to tell them.
24:25Huh?
24:26Yeah.
24:27So why is it so expensive and so out of reach for these families?
24:31With the rare diseases, a lot of them, you've only got a very small number of people who are affected.
24:36So if you're a company devising a new treatment to get your money back, you've got to charge an awful
24:42lot of money.
24:43So they're not making excessive profits, but they have this challenge of developing a drug from scratch,
24:49going through all the testing and the approval that they need, and then passing out to a small number of
24:54people.
24:55Compare that with a very common disease, there's a very easy way to get your money back and therefore the
24:59costs are much lower.
25:00As these parents continue to call for systematic government reform for all rare disease patients, the clock keeps ticking.
25:08They have done everything they can for their children.
25:10Raising awareness on social media, writing books and organising fundraising events and sales.
25:16But this is only the visible surface of a much wider community.
25:20Behind it are countless rare disease patients and families who may not have the platform, resources or strength to make
25:27their voices heard.
25:28For these families, the hope is that no child's chance of treatment is determined by the number of people who
25:34share their condition.
25:35Kristen Hawthorne for KMTV.
25:37And Kristen joins me in the studio now. Kristen, why did you want to tell this story?
25:42Well, like I had said in the trailer, over the past few months I had noticed that KMTV, myself and
25:50our colleague Nayla, as well as those at Kent Online,
25:54had been reporting on a number of these children with rare diseases that were all different.
25:58We've had childhood dementia, Rett syndrome and B-Pan, of course, which is what Birdie has.
26:07And each of them, you know, were either fighting for adaptations, awareness even, and most importantly, the funding as well,
26:15because their treatments are so expensive.
26:18And a lot of them from, you know, what we had heard collectively was that a lot of them felt
26:24kind of unsupported, a bit abandoned.
26:26And why are their children sort of being left out?
26:29And so I spoke to them, went down and because it felt, you know, I felt like we needed to
26:35revisit the story.
26:36So that was why.
26:38It's a very powerful story. Thank you so much, Kristen.
26:42You've been watching Kent Tonight live here on KMTV.
26:45There's more news made just for Kent throughout the evening.
26:48Don't forget, you can always keep up to date with the latest news from across your county by logging on
26:52to KMTV.co.uk.
26:54Thank you so much for watching. Goodbye.
27:15Bye.
27:15Bye.
27:16Bye.