Teens With Chronic Conditions: Can We Still Realise Our Dreams? | On The Red Dot - Chronic - Part 4

[Music] this cutter spins at about 1, 100 1,200 RPM that's quite dangerous because for me leads don't stop easily I think completing this project is quite important to me because that is a significant portion of my GRA with pots when I get from a lying or sitting position to a standing position I feel very dizzy you have a medical issue PL you when you're so young and to have your entire career possibly be destroyed when it's [Music] frustrating [Music] so today I'm heading out to an international school to give a talk to many students so this talk is about my wish experience hi hello oh yes good to see you you with Olaf yeah you ready shall we go up to the Big Show sure please give your loudest Applause for the brave Dominic hi everyone so that's me I have a condition called hemophilia a and what that entails for me it means that I am usually injured these are pictures of me when I was younger I'm injured in every shot so as grown up I have become interested in robotics in primary school I had won a mechanical design Champion so I continued into Robotics and that all led me to the imagineers H they actually brought me to Hong Kong Disneyland where I got to meet two imagineers Joe and Angus and they brought me to see the different rides at the Frozen land our flight will take 1 minute and 32 seconds from Hong Kong Disneyland to Hong Kong's dark to I got a very exclusive experience to be able to go behind the scenes because this is not something that many people can do it's really really grateful to be able to experience this wish and have a dream of mine being [Applause] granted the Disney imagineers help to conceive and design and also build the theme parp robotics is actually used by Disney imagineers in their animatronics and other creations my my dream is to become a Disney imagineer I think to become an imagineer isn't that easy another issue is um there aren't imagineers in Singapore so for me to become an imagineer I would need to move overseas and that is quite a challenge to move overseas it means I have to come to Singapore monthly to purchase the medication and that is not feasible because there's the plane cost you got to worry about and you're also taking time off work I think I've read stories where people were not allowed into a country or not allowed to stay there for work there because of their uh condition that they have having said all these challenges and concerns I have with my medical condition it's always taking one step at a time today last process we're going to do radius the project is actually about a handphone stand today is our final Milling lesson and then after that we're going to do the assembly I feel excited because I get to see the project I've created over the past year so you get to see the final outcome of it completing the project helps me feel more normal because I can also complete projects that my classmates can also do yeah that's it so that's the handphone stand I am the orientation group leader for an event called Healthcare outreach program so I'll be bringing students around uh the N US campus to various stations to show them how it's like to be a healthcare professional and the skills needed so when I stand up my heart rate goes up really high it will go up to higher than 30 bats per minute so what precautions are you taking today so I also brought this huge bottle of water to make sure I stay hydrated throughout the day and I also brought a p oximeter to cheack my oxygen levels just in case anything goes ha wire and also just take a mental note of like where the nearest hospital is it's a little more over the top than my standard precautions so I would be tracking my heart rate consistently so let's say if I do pass out touchwood the medical ID contains all my medical history and what needs to be done and the kind of medications that I'm on because I would not necessarily be conscious uh to without so at any point your hands cannot touch the inside cuz the inside is th this is blue that means is a clean foret the yellow is a dirty foret and then when you dep dry also you need to fold it in half and that get it so you take this and you go around honestly it's a pain in the ass cuz um the kind of things that I'm allowed to do is very limited I have a lot less energy than a lot other people and I have to make sure that I am able to regulate my uh vital before the event so it is very Troublesome yeah and it something that a lot of people don't have to consciously think about so yeah it's just very frustrating in general so doing the event did you feel unwell at any point actually not really today which was surprising but uh the precautions that I managed to take during this event was just uh taking a lot of salt and drinking a lot of water and making sure that I stand up slowly and uh anytime that I felt that uh I was uncomfortable I'll just sit down so a lot of these projects and events that I join they take a lot from me uh but they are very meaningful it helps me feel accomplished prove to myself that I am not limited by my condition and that this condition doesn't Define me I'm hoping to see an improvement in my symptoms as someone with pots I need to do greater gradual exercises I will be going for a physiotherapy Tri out to see whether it's right for me [Music] morning Miss morning when I was a set one I became a preor every morning we will report to our duty spot by 7:15 morning morning finally I will greet students at a four year morning B and also check the diet I can take the if there are other students it I W help them careful I enjoy helping people because uh that actually gave me a sense of Happiness okay okay good day good day he's very very very kindhearted he can somehow totally forgot that he himself is a special need person that he will really go way out to really help because of my condition the injuries happened unexpectedly had to be italized side and have to miss out on lessons [Music] know okay uh infocom club members last year our infocom club had embarked on a swift app development program I decided to join infocal because my parents say technology is useful you can use technology to benefit people 200 by 200 is this size yeah I think that's why I did this whole line no so you only delete this line at the start it wasn't something that I had expected to be when I first joined in forom club initially didn't like coding at first cuz I found it quite boring after a few sessions and being involved in some projects I found coding more interesting as I realized how useful it can be there this we are creating a food app for the western store owner the objective of this app is actually to ease the queue in the store and then also let the student get their food Crick here because we find that the Western Store always has a long queue and then the recess time is actually a bit short my schoolmates can actually use their student account to actually log to this app and order food for students with uh mobility issues uh is a really a huge benefit for them it doesn't require you to actually go down physically to actually order the food you can maybe even ask your friend to help contct it for you when was the last time you were in a oh I was hospitalized at that time what what happened again that time I think I had a swollen knee down here and and then I was limping and then how did your knee get swollen yeah sometimes it can happen unexpectedly the major lesson that I learned from my condition is that life can be very unexpected so I will try to explore different activities try new activities I didn't expect there were that coding more after a few sessions I'm still trying to exp my expirations now that I'm learning coding if I happen to join the it field I hope to join companies that build technologies that will help people with special needs yeah every time before I eat my meal I have to check my blood sugar level so I use to prank blood but now I have like this new device I CAU the Dex com that I inserted in myself last week so I just need to go on my phone and to the app which tells me my blood sugar level the reason why I'm trying out this new device is because last week after school my blood sugar levels are like either really high or really low so I want to monitor my blood sugar level more often and my parents will be able to you know my blood sugar level as well one of the pros of this new device is that I would not need to bring my whole black Googles kit with me solution is in this [Music] document [Music] during my lesson my father messaged me and told me that my blood sugar reading is 12.8 I felt like my blood sugar level is a bit higher than normal like heavy eyelids and like a little bit unable to focus the level now is 13.8 so I'm going to inject insulin now so even though there are a lot of Pros to this device I don't think I want to continue using this [Music] device today I'm going to Sant City with my friends after 10 days I decided to remove my dexc device from my hand I decided to remove this because it is uncomfortable I'm constantly worried if it's going to fall off because if it falls off I won't be able to check my blood sugar readings on my Dexcom app anymore you you oh yeah I should okay so now I'm back on pricking myself and measuring my blood glucose level and it feels normal to me because I've been doing it for so many years when I started secondary school I had a concern whether my friends may think I'm weird and judge me but I do realize that actually a lot of people are caring towards me because they do understand what I'm going through well I've come to realize that everybody has their own differences so in my case mine's diabetes but I don't really feel different from the [Music] rest Hello I'm visha appointment today uh so today I'm here for my first physiotherapy sessions I'm excited to see how this would help my parts improve but I'm also a little nervous I am afraid that my heart will not be able to take it hello hello morning the unique thing about the exercise is that there certain heart rate that you need to exercise at not honest I go all l i 188 okay okay okay we might need to take you back okay so how long have you been on the exercise since November last year so about 3 months already I started with lying first and then I went to recum okay why do you progress to Upright yeah got to learn somehow got to suck s it's okay never mind we take it step by step okay we take it step by step you have to be patient it's not about trying to push yourself harder just to achieve faster results it's a it's a process okay because you looking at adaptations that takes time so your base heart rate right is actually at about 1 4 2 2 1 43 okay and you would be doing that for 10 minutes before we move on to something a bit more vigorous oh significantly lower than my 188 yes correct oops so you should be working at about 162 to about 167 I have been doing it all wrong I have been pushing myself a little too hard uh so I haven't really been seeing a very significant Improvement in my parts okay so Vana will be cycling on this bike for a total of 30 minutes the first 10 minutes will be a Walmart Pace and then after that we will be aiming for a high rate of of 100 I'm pretty sure I hit 100 really quick so you're not supposed to hit 100 now just take it easy is 1009 now that's why we are going down so really go slow go light no Dizz lightness the lightness is something say in the is it supposed to happen it might come on yes so that's where we St down how the No No that PR is okay you have another 2 minutes to go like hiddenness getting worse it's not getting worse it's just bad we can stop Mar okay yeah okay rest first uh it was more tiring than I thought it would be my heart rate hit 100 a lot faster than I thought it would you okay okay set fast a bit sad why like I can barely T this kind of thing that's the reason you're here we're doing stage St okay slowly slowly slowly I know you have your goal in mind okay we trying to get exercise to train up your heart your muscles as well so these things takes time really hopefully I can keep up with the fysal sessions I think it allow me to work better in a clinical setting because I would be able to endure the long-standing hours and not feel so tired after [Music] that my condition is incurable but I can at least help others it motivates me to continue pursuing nursing knowing that I can be there for the patients in their darkest and most painful moments of their life it feels like it heals a part of me I've stopped working since 14 years ago and uh I've not taken up another job since the main reason is taking care of juming another reason is my health issue I was diagnosed with uh high blood pressure and depression about 10 years ago my symptoms started when juming was around four or 5 years so I experienced giddiness know I felt like some the blood rushing to my head then my wife realized that one day she said something is wrong so we have to hit for the hospital again this time myself the doctor said most probably is due to the long-term stress I've been taking the medication for my blood pressure and depression for about 10 years already I'm also taking the medication for my facial SPM for about 2 years already it begin with a very small twitch on the eye but then slowly it start to spread further and further the doctor said that it's uh most probably due to stress and also some uh facial nerve disorder the stress is not just from taking care of juming it's also because of other people's judgment people just don't understand why a man will just stay home to take care of their kids and not working did you mean hey come here give me a hand oh yeah the want to bring the chicken and and the oh the chicken y here you m now as I get more M sometimes I would think that it's some because of my medical condition he had to quit his job as a technician to take care of me sometimes I I will I will blame it on myself why do I have to have this condition and trouble my family control control you see not parallel are you you see all [Music] saying it one saying it are you know you saying it doing my holidays or doing my free time I just don't how to cook for him I actually quite like cooking cuz I get to cook for my family you know contribute as a part of my family some I just volunteer to help out myself yeah is it true [Music] sometimes y [Music] y today is a special day because I'm going to the fature on my own or I don't know what what to expect so I'm quite I'm quite nervous and also happy for myself that you know I'm independent you know yes I'm here recently I started to go to hospital appointments on my own in the past when I ran my parents they will be explaining to my parents and my parents will be explaining to me so uh now I will understand my condition directly from the doctors what what does my name start with J jumbling oh with hemophilia since it is a coric condition I have to manage it for the rest of my life it's quite stressful for my parents so by learning how to be more independent I can Rel their stress and also their [Music] burden so today we are actually having a picnic so we're going to Gardens by the [Music] bay make him run that's right having H Libra uh has changed things in immensely I think it definitely has given him better quality of life without it he wouldn't be able to play the games he's playing yeah it comes at a big price um but I don't know sometimes uh I think if you were to trade that for a better quality of life I don't know how you can put a price t on it anyway I think it is unfortunately quite necessary that if we can cut down on our expenditure where we can you know to live a simpler life so that he can access the medicine that he needs uh we have to do it he's squishing me [Applause] help so H Libra is a very expensive drug and it cost $31,000 per month with subsidy that is brought down to $3,000 per month and this subsidy has to be renewed every year and I will only know the results of it later this year at around September uh I do hope that the subsidy goes through because without it I cannot afford the medication who I know there's no cure for hemophilia now but I do hope that one day there will be a cure because there are so many more activities we can do as a family right now we don't really do a lot of risky activities like trampoline park and I think that's mainly because of me because if I can do it everyone doesn't do it if you remove that Dominic at similia portion it means that there's so many more experiences we can experience as a family and I think yeah that's really then [Music] amazing

Channel: CNA Insider

Views: 23,309

Keywords:

Id: l3Ee4yCAjIA

Length: 22min 52sec (1372 seconds)

Published: Thu Apr 11 2024