Only 16 People In The World Have My Rare Condition Born Different
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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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]