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'People always say that you should feel comfortable in your own skin. | 0:00:09 | 0:00:13 | |
'For me, that's a little harder to achieve. | 0:00:13 | 0:00:16 | |
'That's because my skin is so delicate, | 0:00:16 | 0:00:19 | |
'that even the slightest touch or bump can cause huge damage. | 0:00:19 | 0:00:23 | |
'My name is Sam, and I was born with a condition called | 0:00:24 | 0:00:26 | |
'epidermolysis bullosa, or EB for short, which is currently incurable. | 0:00:26 | 0:00:32 | |
'And over the next few minutes...' | 0:00:32 | 0:00:33 | |
I'm going to tell you about an amazing charity called DEBRA, | 0:00:33 | 0:00:37 | |
who quite simply make life worth living for the 5,000 people | 0:00:37 | 0:00:41 | |
in the UK, like me, who have EB. | 0:00:41 | 0:00:43 | |
'EB is a genetic disorder but it's possible for a parent to be | 0:00:44 | 0:00:48 | |
'a carrier without having the condition. | 0:00:48 | 0:00:50 | |
'So, having an affected child can often come as a complete shock. | 0:00:50 | 0:00:55 | |
'Meet Jenna, who gave birth to Freddie a year ago.' | 0:00:55 | 0:00:58 | |
'My labour was brilliant - everything was perfect to that moment | 0:00:58 | 0:01:02 | |
'when he was born.' | 0:01:02 | 0:01:04 | |
The atmosphere completely changed in the room - | 0:01:04 | 0:01:07 | |
everyone's face went white and you could see that something was wrong. | 0:01:07 | 0:01:11 | |
Freddie was born with no skin on his hands and feet | 0:01:11 | 0:01:14 | |
and began his life in extreme pain. | 0:01:14 | 0:01:16 | |
'He had EB.' | 0:01:16 | 0:01:18 | |
We were told two stories - he could either live a relatively | 0:01:18 | 0:01:23 | |
normal life, or he could die before he was six months old. | 0:01:23 | 0:01:27 | |
That hit me like a brick wall. | 0:01:27 | 0:01:29 | |
Freddie's first few months were touch and go. | 0:01:29 | 0:01:31 | |
You could see he was in agony. | 0:01:31 | 0:01:33 | |
He tried to feed, and he tried to, sleep like a normal baby, | 0:01:33 | 0:01:36 | |
but you could see he barely slept because of the pain, | 0:01:36 | 0:01:39 | |
which, thinking back on it now, is just... | 0:01:39 | 0:01:41 | |
It's heartbreaking. | 0:01:41 | 0:01:43 | |
'Taking him home the first day was a big thing for me | 0:01:44 | 0:01:48 | |
'because I felt very alone.' | 0:01:48 | 0:01:50 | |
'Jenna had to quickly learn how to cope with seeing | 0:01:50 | 0:01:53 | |
'Freddie in constant distress, | 0:01:53 | 0:01:55 | |
'especially during his daily dressing change.' | 0:01:55 | 0:01:58 | |
'I fear that...when he's looking up at me, he thinks, | 0:01:58 | 0:02:02 | |
'"Mummy why are you doing this to me?" | 0:02:02 | 0:02:04 | |
'Because he hasn't got that mindset yet to understand that what | 0:02:04 | 0:02:09 | |
'I am doing to him is to try and help him.' | 0:02:09 | 0:02:11 | |
FREDDIE CRIES | 0:02:11 | 0:02:14 | |
'It's horrendous.' | 0:02:14 | 0:02:15 | |
It's completely heartbreaking. | 0:02:15 | 0:02:17 | |
'But Jenna knows that her DEBRA community support manager, Miranda, | 0:02:17 | 0:02:21 | |
'is just a phone call away.' | 0:02:21 | 0:02:23 | |
Sorry to bother you, I just really needed a chat. | 0:02:23 | 0:02:26 | |
'Oh, that's all right, you know that - any time.' | 0:02:26 | 0:02:29 | |
'I do have difficult days. | 0:02:29 | 0:02:31 | |
'To the point where I do need a phone call.' | 0:02:31 | 0:02:33 | |
Miranda's been my absolute world in all of this. | 0:02:33 | 0:02:37 | |
'Moving house recently, | 0:02:37 | 0:02:39 | |
'Miranda being able to access a certain amount of funds, | 0:02:39 | 0:02:42 | |
'provided us with the carpet for our front room and stairs. | 0:02:42 | 0:02:45 | |
'Obviously with him eventually crawling, | 0:02:45 | 0:02:48 | |
'it had to be a certain type of carpet. | 0:02:48 | 0:02:50 | |
'Having a support worker is having a best friend that knows about EB.' | 0:02:50 | 0:02:55 | |
She's like a very new Mary Poppins to me. | 0:02:55 | 0:02:59 | |
'I still have to have regular help to change my dressings, | 0:03:01 | 0:03:04 | |
'something my mum did until I was 19, | 0:03:04 | 0:03:06 | |
'and now I have carers to help me with this.' | 0:03:06 | 0:03:09 | |
If you live with EB like I do, you have to be really careful to | 0:03:09 | 0:03:13 | |
monitor everything - your pain medication, your wounds, | 0:03:13 | 0:03:16 | |
check for anything different, burst blisters... | 0:03:16 | 0:03:19 | |
You can't let it run your life, otherwise you wouldn't... | 0:03:19 | 0:03:23 | |
You wouldn't go out. | 0:03:23 | 0:03:24 | |
DEBRA have done everything possible to make | 0:03:24 | 0:03:27 | |
life as normal as can be, and that, believe me, is something priceless. | 0:03:27 | 0:03:31 | |
'For an average 11-year-old boy, going out to play is | 0:03:33 | 0:03:36 | |
'something that's done without a second thought. | 0:03:36 | 0:03:38 | |
'But this unfortunately, is not the case for Josh Guild.' | 0:03:38 | 0:03:42 | |
The most frustrating thing about it is that I can't really go out | 0:03:42 | 0:03:48 | |
and play with my mates after school. | 0:03:48 | 0:03:51 | |
The slightest bit of friction could cause a blister or my skin to | 0:03:51 | 0:03:55 | |
peel off. | 0:03:55 | 0:03:57 | |
Josh does have down days. | 0:03:57 | 0:03:59 | |
And, you know, we do get the, "Why me?" | 0:03:59 | 0:04:03 | |
Erm, "It's not fair. I'm fed up of this." | 0:04:03 | 0:04:06 | |
'And I know all too well that a child with EB has to attend | 0:04:06 | 0:04:10 | |
'lots of hospital appointments, which adds to the stress.' | 0:04:10 | 0:04:13 | |
'It isn't just the clinics that we have to go to, | 0:04:13 | 0:04:16 | |
'it's all of the therapy side of things as well.' | 0:04:16 | 0:04:18 | |
-And how are your hands for that? -They were good. | 0:04:18 | 0:04:21 | |
-Were they all right? -Yeah. | 0:04:21 | 0:04:22 | |
So what are these? These are new splints, are they? | 0:04:22 | 0:04:24 | |
'Getting used to all of those people around you | 0:04:24 | 0:04:27 | |
'and sometimes you can, you know, get lost sometimes in it.' | 0:04:27 | 0:04:31 | |
'To make life easier, DEBRA has pioneered a kind of | 0:04:32 | 0:04:36 | |
'one-stop-shop clinic for people with EB, | 0:04:36 | 0:04:38 | |
'helping to provide specialist | 0:04:38 | 0:04:40 | |
'dieticians and nurses who work as part of a multi-disciplinary team. | 0:04:40 | 0:04:44 | |
'But for families like Josh's, it's not just the clinical | 0:04:44 | 0:04:47 | |
'support from DEBRA that makes the difference.' | 0:04:47 | 0:04:49 | |
DEBRA have helped us as a family by providing support. | 0:04:49 | 0:04:53 | |
The DEBRA holiday that we had was hassle-free, | 0:04:53 | 0:04:56 | |
it was an adapted caravan so we didn't have to | 0:04:56 | 0:04:59 | |
worry about wheelchair access, it was just a good family time. | 0:04:59 | 0:05:03 | |
'If there wasn't a charity like DEBRA, life would be a lot harder. | 0:05:03 | 0:05:07 | |
'Because it isn't just about, the day-to-day care.' | 0:05:07 | 0:05:10 | |
It's also about the emotional support, | 0:05:10 | 0:05:12 | |
not only for us as a family but also for Josh as well. | 0:05:12 | 0:05:15 | |
Having EB is like the proverbial roller coaster. | 0:05:17 | 0:05:20 | |
Things can be going well but then you can shoot right back down again. | 0:05:21 | 0:05:26 | |
A couple of years ago, I got engaged to my boyfriend - | 0:05:26 | 0:05:29 | |
something I never thought would happen to me. | 0:05:29 | 0:05:32 | |
But that same year, the one thing that everyone with EB | 0:05:32 | 0:05:36 | |
lives in fear of happened - I discovered I'd got skin cancer. | 0:05:36 | 0:05:40 | |
It was a massive, massive bombshell. | 0:05:40 | 0:05:42 | |
Thankfully, I'm cancer-free now, | 0:05:44 | 0:05:46 | |
but when you live with a condition like EB, then you know just | 0:05:46 | 0:05:50 | |
how important it is to make the most of the time that you've got. | 0:05:50 | 0:05:54 | |
And DEBRA really gets that. | 0:05:54 | 0:05:56 | |
They gave me the confidence to realise my dreams | 0:05:56 | 0:05:59 | |
and have helped me to live my life to the full. | 0:05:59 | 0:06:02 | |
From going to university, | 0:06:02 | 0:06:04 | |
getting married, to even becoming a storm chaser. | 0:06:04 | 0:06:07 | |
This might look like madness to you, but for me | 0:06:07 | 0:06:10 | |
it's called living for today! | 0:06:10 | 0:06:12 | |
SHE LAUGHS | 0:06:12 | 0:06:13 | |
But although I make sure my life is pretty full, | 0:06:13 | 0:06:15 | |
the EB is always there with me. | 0:06:15 | 0:06:19 | |
People with EB have to put on a brave face because underneath | 0:06:19 | 0:06:22 | |
it all, it's a life of constant pain and reliance on other people. | 0:06:22 | 0:06:27 | |
And that can take its toll emotionally. | 0:06:27 | 0:06:30 | |
The ultimate answer to all this, is finding a cure and that's why | 0:06:30 | 0:06:34 | |
DEBRA has funded research into EB for the last 30 years. | 0:06:34 | 0:06:38 | |
Funding from DEBRA has made an enormous difference to what | 0:06:38 | 0:06:40 | |
we know about EB. | 0:06:40 | 0:06:42 | |
For example, over the last ten years we've been able to discover | 0:06:42 | 0:06:45 | |
the causes of EB in terms of genes and mutations and that's been great. | 0:06:45 | 0:06:50 | |
But what we need to do now is move forward and take | 0:06:50 | 0:06:52 | |
the advances from the laboratory back to the clinic, and that | 0:06:52 | 0:06:56 | |
means raising funds for clinical trials - trials of new therapies - | 0:06:56 | 0:06:59 | |
genes, proteins, cells - things that can modify EB to improve the | 0:06:59 | 0:07:03 | |
condition and really start to change lives and consign EB to history. | 0:07:03 | 0:07:08 | |
EB has made me who I am, | 0:07:08 | 0:07:10 | |
but I would love to never wear these bandages, ever again. | 0:07:10 | 0:07:15 | |
JOSH: 'I would like to see, maybe, a cure to be found for EB' | 0:07:15 | 0:07:21 | |
just for some area of my skin to be a bit normal. | 0:07:21 | 0:07:26 | |
It is such a big thing for people to be able to donate | 0:07:26 | 0:07:28 | |
and to be aware of this condition so that they can try and help, | 0:07:28 | 0:07:31 | |
to get the cure that we're asking for. | 0:07:31 | 0:07:34 | |
EB is a rare condition, but that means that DEBRA is | 0:07:34 | 0:07:38 | |
absolutely crucial to people who have it, | 0:07:38 | 0:07:41 | |
because DEBRA is the only charity in the UK dedicated to supporting us. | 0:07:41 | 0:07:45 | |
Your money can help make lives like Freddie's | 0:07:45 | 0:07:48 | |
and Josh's more bearable right now | 0:07:48 | 0:07:50 | |
and could even help to find a cure in the future through research. | 0:07:50 | 0:07:55 | |
Please, help if you can. | 0:07:55 | 0:07:57 | |
You can make a difference now, by going to the website | 0:07:57 | 0:08:00 | |
bbc.co.uk/lifeline | 0:08:00 | 0:08:03 | |
where you can donate. | 0:08:03 | 0:08:04 | |
If you haven't got internet access, please call 0800 011 011. | 0:08:04 | 0:08:09 | |
And if you can't get through the first time, please, | 0:08:09 | 0:08:12 | |
please, keep trying. | 0:08:12 | 0:08:13 | |
Telephone calls are free from most landlines. | 0:08:13 | 0:08:16 | |
Some networks and mobile operators will charge for these calls. | 0:08:16 | 0:08:19 | |
You can also donate £10 by texting GIVE to 70121. | 0:08:19 | 0:08:24 | |
Texts cost £10 plus your standard network message charge | 0:08:24 | 0:08:28 | |
and the whole £10 goes to DEBRA. | 0:08:28 | 0:08:30 | |
Full terms and conditions can be found at | 0:08:30 | 0:08:32 | |
bbc.co.uk/lifeline | 0:08:32 | 0:08:35 | |
Or if you'd like to post a donation, please, make your cheque | 0:08:35 | 0:08:38 | |
payable to DEBRA and send it to Freepost, BBC Lifeline Appeal, | 0:08:38 | 0:08:44 | |
writing DEBRA on the back of the envelope. | 0:08:44 | 0:08:46 | |
And if you want the charity to claim Gift Aid on your donation, | 0:08:46 | 0:08:49 | |
please include an e-mail or postal address | 0:08:49 | 0:08:51 | |
so that they can send you a Gift Aid form. | 0:08:51 | 0:08:53 | |
Thank you. | 0:08:53 | 0:08:55 |