00:00 My condition called NDP syndrome is only known to affect me and 15 other people
00:08 worldwide. What I want people to do is to look past the way I look. I really want to
00:15 have a positive and meaningful impact. Dancing and photography is two things
00:24 that has helped me to keep going.
00:29 Because the skin is very tight and gets very dry we have to moisturise Dylan's
00:39 feet quite regularly. His toes here don't straighten do they? They get very sore as
00:44 well. NDP affects Dylan's feet. Dylan walks on his bones. He has no padding at
00:50 all. He does need to use a lot of protection otherwise they just ulcerate
00:55 and just become so sore that he can't walk. Do you want to put your socks on? I have a
01:01 condition called NDP syndrome. NDP stands for mandibular dysplasia with
01:09 deafness and four-joyed features. Some of the effects can include loss of fat, loss
01:16 of hearing and it can cause a really small jaw and small ears. When Dylan's
01:22 condition became obvious we were aware that he'd lost fat all over his body.
01:27 Hearing was an issue. There was the additional factors of autism. In terms of
01:31 Dylan's clothes we had to be really careful to get things that he'd actually
01:35 wear. Dylan has quite sensory issues in relation to his clothes. My condition is
01:42 only known to affect me and 15 other people worldwide. Sometimes I do feel sad
01:49 about it. I think that it's extraordinary because I'm very unique. When Dylan was
01:58 born he was like any other baby. When he was about one people started to comment
02:03 on how thin he looked and asked me if he was eating properly.
02:08 Dylan was my first baby so I didn't really have anything to compare him to.
02:13 When he was about 18 months he lost all the fat from his body and his face was
02:20 quite skeletal looking. A lot of doctors started questioning whether we were
02:27 looking after Dylan properly, whether we were feeding him right. That made me
02:32 quite upset. The more that we went to the hospital we'd be told that they thought
02:39 that something was wrong. They'd tell us that they thought he might have leukemia.
02:42 They'd do the tests for that and then they'd say oh it's not leukemia but we
02:47 think it could be this and as the conditions that they were testing for
02:52 became rarer it became scarier and scarier. We didn't know what was
02:56 happening until Dylan was 10. We were told that Dylan was the ninth person in
03:01 the world with MDP syndrome. The oldest person with MDP is 65. It's a genetic
03:07 condition. For some people it shows when they're very young like Dylan was 18
03:11 months. For other people it doesn't start showing until they're 11 or 12 so we're
03:16 not sure what impact that has on the symptoms and how things progress. I was
03:22 just so nervous about Dylan starting high school I just felt like I was
03:25 throwing him to the sharks and I think the first couple of years especially
03:29 were very difficult. School at the start was difficult and I didn't think anyone
03:36 at school cared. I would come home and go in my room but I think music helped me.
03:45 I used my family to help me to stay strong. I started to get into photography
03:53 round about the start of high school and I would take photos on my phone and that
04:01 was a way to help me to stay happy and I would just come home and show my mum and
04:07 my dad the photos that I took on my phone and they were quite amazed. Social
04:14 media was a great way to show my photography work to people and just to
04:20 show that I have something that I'm passionate about. I think Dylan just
04:26 developed that strength of character to say well this is me this is who I am.
04:32 I think photography has helped me to keep going. Without photography I would
04:41 not feel as positive about myself and I don't think I would be as confident as I
04:49 am today. I also love dancing that's a big part of my life. It's something that
04:57 I'm also really passionate about. Your movement is really free-flowing, you're
05:03 connecting with the music. It's really beautiful to watch Dylan dance. You can
05:08 see pure joy. Dylan amazes me every day. I can't believe how he's turned out
05:15 really. He's just persevered to just become this amazing young man. We're
05:22 really proud of who you are and everything that you've had to deal with
05:27 and the way that you've done it with such grace and such strength and such
05:33 humility.
05:36 you
05:38 you
05:40 you
05:42 you
05:44 you
05:46 you
05:48 [BLANK_AUDIO]
Comments