Living with a Terminal Illness and Still Happy (Muscle Myopathy)

Living with a Terminal Illness and Still Happy (Muscle Myopathy)


what’s your biggest hope for the future dying for housing away knowing that I lived life if you had to introduce yourself to the world what would you say hi my name is Fabian Holliday and I’m a 16 year old boy in 10th grade I have a disease called muscle myopathy which is a deterioration of muscle the longer I’m alive though less muscle huh and as I get older it’ll take away more muscle which means it’s taking away a lot of my strength this also means that I will lose the ability to do a lot of things whatever its challenge your situation you’re dealing with you can turn that into a strength and learn from that challenges such as welcome to SBS K join me as I travel around the world an interview individuals living with a condition to prove no matter how you communicate but what obstacles you face you’re always deserving of love and acceptance so without hesitation let’s meet today’s friend are you always hooked up to an oxygen tank yes and the floor and maybe a year so ago I didn’t need oxygen 24/7 I would just need it at night when I sleep but now it’s becoming a necessity given what you’re facing would you consider yourself an optimistic person for a cynical person say optimistic always shy look at the positive things and I’m fairly confident that I can figure out a way to turn any negative problem into a positive what is the positive of your current situation it makes me start here because they need challenge that you encounter in life eventually maybe you start here ok when somebody sees this video and here’s your story for the first time what do you hope they get out of it that despite my situation Wow negative my life may seem I am still positive it was still having fun and happy and that if I can do it a lot of people should be able to do it here I’m just gonna turn just a little bit one more time and then bring my ear and my right up while takes the light and then pull we hold my head up anything just like me okay now would you just grab your dad’s in the world [Laughter] he’s supported for one and I still know I explained it I guess like he’s just there like don’t do anything just support me and he’s very protective I guess he’s a father like whatever your definition of a father is that’s what he is you only have one life despite all that native challenges you will have look at the positive things and don’t take the little things for granted because I’m older now I understand like the situation I’m in you like that’s changed my outlook on life I would say I’m more grateful about waking up every day and I’m treasuring Christ I did treasure the little things on life what are your hopes for the future for my son to be here as long as God allows him to and for us to enjoy the time that we have together and to make an impact on the people around us when I was older I was told good golly my disease being terminal and I guess from there that’s me I’ve changed like my health look on my fellowship what went through your mind when he was first diagnosed denial at first and devastated at the same time I don’t think any parent wants to know that there’s a time frame when their child’s life that’s the way I try to deal with it just by this plug got my dad told me and it was God didn’t make you this way because you can’t handle it he made it this way because you’re able doing him okay can’t really help myself anymore like what I need to adjust myself I need my dad to help me or find me I’m eating I need my dad to help me or anything I mean I need my dad to help me the only thing I can do now is with my hands what’s the number-one thing you hope the world understands about your son that he’s human just like everyone else and has feelings that he’s caring and that he’s like every other teenager – that was – to do things to try things to experience things and just because he’s disabled doesn’t mean that he’s not able to would you rather have three good friends you can rely on for anything or $3,000,000 oh man let’s see the friends why does this money money is important but it’s not everything money doesn’t last forever and if they’re friends I can rely on they’re probably gonna be in my life forever if somebody meets you for the first time what do you hope is the first thought they have maybe like what’s his name or something like that I guess I hope they don’t think like he’s weirder like why is he like what’s his problem or something like that because usually like when people see me they stare which I find very disrespectful and I would hope that instead of staring they would just say hi before when people would stare I would just be so like oh not necessarily depressed but sometimes it would happen and I would cry it’ll be stop fighting and I would just be slightly angry like the world I would say and for a long time it would frustrate you know hate that I’m like this and I’ll hate that I’m like different and even now I saw like being different at the same time I try to like welcome it and turn that into positivity I guess like my new year’s resolution was to become one with myself and accept myself when somebody meets you for the first time what do you want them to say hi just I’m just saying hi tells me like oh they’re they’re respectable person there oh they understand that I’m just like that but have disabilities my son educates me all the time literally every day on life for a young teenager they may be in an old man so he calls me I’m always learning from it when you surround yourself by more positive people it’s very easy to stay positive and I guess just jacked you from the negative things and I find that when I’m having fun or around positive people it’s very hard to think about my situation can you my friend would turn my finger something is sticky mr. dad helped you a lot yes it’s hard to like we do a lot of things lately I used to feed myself but now I don’t take myself overtime and like what has it been like for you to have to take over some of those tasks such as feeding your son I would say challenging to my son however I don’t care he’s my son and and it’s things that I as a father you you should do it’s only time and it’s only it’s all it takes is a little time to to be invested in the show that you’re invested in the show that you care last year I felt like I was at rock bottom but I just felt like depressed and I did and surely I didn’t know why I just felt it when you have those moments of weakness is there something other people can do to help pick you up done being there and understanding that for me talking about it doesn’t help shot of like lighten the mood I guess ‘sir like a joke or do a fun activity or something like that if you’re meeting someone for the first time what would you want to discuss their likes and dislikes and yes I didn’t know like their boundaries are cut to use what are some of your dislikes hate negative people die just negative or angry all the time for like no reason people that think the world revolves around them or I think they’re the only person that has problems or makes everything about them what’s something the public should know that would make your life better I would say that you encountered me or any individual that is disabled to not I guess judge them for how they would thanks for watching if you appreciate what we’re doing and want to see SBS K grow make sure to LIKE comment and subscribe this will help us reach even more people and make the world a better place thank you when you look one another in the eyes with your mind god I love this boy boys yeah

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