DYLAN Lombard, 18, from Glasgow, Scotland has a rare condition called MDP Syndrome, which stands for mandibular dysplasia with deafness and progeroid features. MDP prevents the body from storing any fatty tissue and only 15 other people in the world have this condition. Due to his different appearance, Dylan sadly experienced some difficulties at school with some of the other pupils being unpleasant to him. However, he discovered photography which became a huge comfort to him and helped him overcome some of the negativity he had to endure. Dylan told Truly about the hugely positive influence photography has had on his life and mental well being: “Without photography I would not feel as positive about myself and I don’t think I would be as confident as I am today.” Dylan’s well known around Glasgow for his photos and has gathered a following on Instagram. Along with his photography, Dylan also loves dance which is another creative activity that brings him joy and strengthens his confidence.
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PeopleTranscript
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.
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05:48 [BLANK_AUDIO]