00:00 My condition, called NDP syndrome, is only known to affect me and 15 other people worldwide.
00:09 What I want people to do is to look past the way I look.
00:14 I really want to have a positive and meaningful impact.
00:19 Dancing and photography is two things that has helped me to keep going.
00:27 Because the skin is very tight and gets very dry, we have to moisturise Dylan's feet quite regularly.
00:40 His toes here don't straighten, do they? They get very sore as well.
00:45 NDP affects Dylan's feet. Dylan walks on his bones. He has no padding at all.
00:51 He does need to use a lot of protection, otherwise they just ulcerate and become so sore that he can't walk.
00:58 Do you want to put your socks on?
01:01 I have a condition called NDP syndrome.
01:05 NDP stands for mandibular dysplasia with deafness and four-jawed features.
01:12 Some of the effects can include loss of fat, loss of hearing and it can cause a really small jaw and small ears.
01:21 When Dylan's condition became obvious, we were aware that he'd lost fat all over his body.
01:28 Hearing was an issue. There was the additional factors of autism.
01:31 In terms of Dylan's clothes, we had to be really careful to get things that he'd actually wear.
01:36 Dylan has quite sensory issues in relation to his clothes.
01:41 My condition is only known to affect me and 15 other people worldwide.
01:48 Sometimes I do feel sad about it. I think that it's extraordinary because I'm very unique.
01:56 When Dylan was born, he was like any other baby.
02:01 When he was about one, people started to comment on how thin he looked and asked me if he was eating properly.
02:09 Dylan was my first baby, so I didn't really have anything to compare him to.
02:14 When he was about 18 months, he lost all the fat from his body and his face was quite skeletal looking.
02:23 A lot of doctors started questioning whether we were looking after Dylan properly, whether we were feeding him right.
02:31 That made me quite upset.
02:36 The more that we went to the hospital, we'd be told that they thought that something was wrong.
02:40 They'd tell us that they thought he might have leukaemia.
02:43 They'd do the tests for that and then they'd say, "Oh, it's not leukaemia, but we think it could be this."
02:49 And as the conditions that they were testing him for became rarer, it became scarier and scarier.
02:55 We didn't know what was happening until Dylan was 10.
02:58 We were told that Dylan was the ninth person in the world with MDP syndrome.
03:04 The oldest person with MDP is 65. It's a genetic condition.
03:08 For some people it shows when they're very young, like Dylan was 18 months.
03:12 For other people, it doesn't start showing until they're 11 or 12.
03:16 So we're not sure what impact that has on the symptoms and how things progress.
03:21 I was just so nervous about Dylan starting high school. I just felt like I was throwing him to the sharks.
03:27 And I think the first couple of years especially were very difficult.
03:32 School at the start was difficult and I didn't think anyone at school cared.
03:39 I would come home and go in my room, but I think music helped me.
03:46 I used my family to help me to stay strong.
03:51 I started to get into photography round about the start of high school.
03:58 I would take photos on my phone and that was a way to help me to stay happy.
04:04 I would just come home and show my mum and my dad the photos that I took on my phone.
04:10 And they were quite amazed.
04:13 Social media was a great way to show my photography work to people.
04:20 And just to show that I have something that I'm passionate about.
04:25 I think Dylan just developed that strength of character to say, "Well, this is me. This is who I am."
04:33 I think photography has helped me to keep going.
04:38 Without photography I would not feel as positive about myself.
04:45 And I don't think I would be as confident as I am today.
04:53 I also love dancing. That's a big part of my life.
04:56 It's something that I'm also really passionate about.
05:00 Your movement is really free-flowing. You're connecting with the music.
05:05 It's really beautiful to watch Dylan dance. You can see pure joy.
05:09 Dylan amazes me every day. I can't believe how he's turned out really.
05:16 He's just persevered to just become this amazing young man.
05:22 We're really proud of who you are and everything that you've had to deal with.
05:28 And the way that you've done it with such grace and such strength and such humility.
05:36 [Dylan's Photography]
05:42 [Dylan's Photography]
05:47 [Dylan's Photography]
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