#I literally don’t understand how he didn’t grow up with 37 mental disorders like

[dontmindme2600]

I think the funniest thing about Sanji’s character is that he already had a horribly traumatizing backstory when he was introduced, but then the story got to whole cake island and Oda decided this bitch needed ANOTHER ONE. ITS NOT EVEN LIKE “someone close to me died and that was it” TOO SANJI ALWAYS IS GOING THROUGH THE MOST ATROCIOUS SHIT

[thysurveys]

730.

1: How tall or short do you wish you were? I’m fine. 2: What’s your dream pet? I don’t really have one.

3: Do you have a favorite clothing style? This may sound lame, but I really enjoy a chic “smart casual” look. 4: What was your favorite video game growing up? Sims. Always has been, always will be. 5: What three things/people do you think of most each day: Kevin, my future and . . . I don’t know.

6: If you had a warning label, what would yours say? "May freak out unexpectedly.”  7: What is your Greek personality type (Sanguine, Phlegmatic, Choleric, or Melancholic)? I don’t know. 8: Are you ticklish? I am. 9: Are you allergic to anything? I am not. 10: What’s your sexuality? Heterosexual.  11: Do you prefer tea, coffee, or cocoa? Cocoa more than any of the other two. Tea before coffee. 12: Are you a cat or dog person? I’ll say cats. 13: Would you rather be a vampire, elf, or merperson? Merperson, if I had to choose? I don’t know. 14: Do you have a favorite Youtuber? I have plenty of. 15: How tall are you? 5′2″. 16: If you had to change your name, what would you change it to? I don’t know if I would. 17: How much do you weigh? Next question. 18: Do you believe in ghosts/spirits? I do. 19: Do you like space or the ocean more? They’re both fascinating.  20: Are you religious? No. 21: Pet peeves? I have misophonia, so. There you go. 22: Would you rather be nocturnal or diurnal (opposite of nocturnal)? Diurnal. My anxiety is at its worse at night. 23: Favorite constellation? Aries, only because it’s my star sign?  24: Favorite star? The sun? I don’t really have a favourite star though it would be interesting to have one other than the “sun” lol. 25: Do you like ball-jointed dolls? I don’t really care for them? 26: Any phobias or fears? The unknown. I also have Trypophobia, feeling out of control of my own body and death.  27: Do you think global warming is real? Yeah. 28: Do you believe in reincarnation? I don’t know if I do or if I don’t, though I have watched interesting documentaries on reincarnation. Story time: my dad once told me when he was younger, my Pop and Nan were in the car with my dad, and they were driving to a place they hadn’t been to before and they were lost. My dad said to my Pop (who was driving) to turn at the end of the street and there’d be a bridge. They did, and there was a bridge. My dad knew the place, but he had never been there before in his entire life, so. I don’t know. It’s kind of crazy. 29: Favorite movie? I never know. I have way too many. 30: Do you get scared easily? Yeah, definitely. 31: How many pets have you own in your lifetime? I have had plenty of “family” pets growing up, but myself and Kevin have had two. A dog and a cat. 32: What is a color that calms you? Blue. 33: Where would you like to travel and/or live? America (which I am in March) and the UK. I mean, I would happily travel just about anywhere and everywhere given the opportunity.  34: Where were you born? Australia. 35: What is your eye color? Green. 36: Introvert or extrovert? Introvert, one-hundred percent. 37: Do you believe in horoscopes and zodiacs? No. 38: Hugs or kisses? Both. 39: Who is someone you would like to see/visit right now? I am with him right now, so no one. 40: Who is someone you love deeply? Kevin. 41: Any piercings you want? I’m okay for now. 42: Do you like tattoos and piercings? Yes, I do. 43: Do you smoke or have you ever done so? I was, once upon a time, a smoker. 44: Talk about your crush, if you have one! More than a crush. He’s my boyfriend. 45: What is a sound you really hate? I am not great with very “loud” sounds.  46: A sound you really love? Rain! I was actually talking about this the other night with Kevin. 47: Can you do a backflip? Nope. 48: Can you do the splits? Nope. 49: Favorite actor and/or actress? I really fancy Drew Barrymore. I don’t know why. I think she’s pretty badass. 50: Favorite book? Too many to choose from. 51: How are you feeling right now? Anxious. 52: What color would you like your hair to be right now? I need to recolour it again (I had a blonde balayage, but it’s quickly fading) 53: When did you feel happiest? I don’t know. I haven’t felt too “happy” recently. 54: Something that calms you down? Rain. 55: Have any mental disorders? Clinical depression, Depersonalisation Disorder, PTSD (though, this has subsided a lot), Social Anxiety, GAD. These are all diagnosed. I also think I have BPD (undiagnosied).  56: What does your URL mean? My survey Tumblr is self-explanatory, my main Tumblr is solefulness. And I don’t know. It’s inspired by the word “soulful”  57: What three words describe you the most? Creative, anxious and . . . I asked Kevin for help and he said “beautiful”, but you know. Lol. 58: Do you believe in evolution? I guess I do, yes. 59: What makes you unfollow a blog? They haven’t updated in forever or they say some stupid offensive bullshit (e.g. racism, classism, homophobia, etc.). < What they said. 60: What makes you follow a blog? Aesthetics? Lol 61: Favorite kind of person: An INFJ lol or similar. Basically, someone who has an advanced bout of empathy, understanding.  62: Favorite animal(s): Pandas and cats. 63: Name three of your favorite blogs. No, I can’t be bothered and I don’t even know if I do have a favourite right now. 64: Favorite emoticon: The “hang loose” emoticon was the first that came to mind, though I can’t say it’s my fave. Maybe a leaf (I am so lame) 65: Favorite meme: I use a lot of Full House memes. 66: What is your MBTI personality type? INFJ. < me too! 67: What is your star sign? Aries. 68: Can your dog roll over on command, if you have a dog? My dog’s dead and she never obeyed commands. She was way too hyper. < Literally my same answer.  69: What outfit out of all your clothes do you like to wear the most? A cardigan as of late. 70: Post a selfie or two? I ain’t ready for a face reveal.  71: Do you have platform shoes? Nope. 72: What is one random but interesting fact about yourself? I would say I am an INFJ considering they take up only one percent of the population, but you already know that. Let me ask Kevin. He said: “you were the first to graduate in your family. I think. I don’t know. Is that a good one?” 

There you have it, folks.  73: Can you do a front flip? No. 74: Do you like birds? No. I do not like birds. They freak me out. 75: Do you like to swim? I am not crazy about it. 76: Is swimming or ice skating more fun to you? Swimming > ice skating any time. 77: Something you wish didn’t exist: Homophobia. 78: Some thing you wish did exist: Fifty large sacks of money right in front of me. > ngl. Me too. 79: Piercings you have? My ears. 80: Something you really enjoy doing: I like to watch a lot of YouTube and a lot of Netflix (or any film, really).  81: Favorite person to talk to: Kev. 82: What was your first impression of Tumblr? I don’t know. 83: How many followers do you have? Enough. 84: Can you run a mile within ten minutes? I asked Kevin and he laughed. So, I guess not. 85: Do your socks always match? I barely wear socks. 86: Can you touch your toes and keep your legs straight completely? I can do. 87: What are your birthstones? Aquamarine.  88: If you were an animal, which one would you be? I don’t know tbh. A panda or a cat. Maybe a cat. 89: If a flower could aesthetically represent you, what kind would it be? Good question. Um, a baby breath bc they’re small and simple. 90: A store you hate? I don’t know nor care. Maybe Gloria Jeans bc I once found out they don’t support gay marriage. 91: How many cups of coffee can you drink in one day? None. I can’t drink it without freaking out. 92: Would you rather be able to fly or read minds? Both scare me. Can I choose to read minds? 93: Do you like to wear camo? Not my style. 94: Winter or summer? I do love winter, but lately I’ve needed summer. 95: How long can you hold your breath for? I don’t know. 96: Least favorite person? Any evil dictator. < True. 97: Someone you look up to: Kevin at the moment. 98: A store you love? Kmart if I had to choose. Any homeware shop too.  99: Favorite type of shoes My Nike runners are my fave right now. 100: Where do you live? Aus. 101: Are you a vegetarian or vegan? If so, why? No, just because I’m not. 102: What is your favorite mineral or gem? Never really thought about it. 103: Do you drink milk? I do sometimes. 104: Do you like bugs? I don’t hate them, but I don’t go out collecting them either. 105: Do you like spiders? I am not a great fan but again, I don’t collect them. 106: Something you get paranoid about? Every thing. 107: Can you draw?: No. Unfortunately not. 108: Nosiest question you have ever been asked? I don’t know. It’s funny because via a survey, I am open to any question. But if it’s someone face to face, or away from Tumblr, I freak out and think anything is a nosy question. 109: A question you hate being asked? "Why are you quiet?” Like, I don’t know? Maybe because I am. 110: Ever been bitten by a spider? No. 111: Do you like the sound of waves at the beach? My favourtie. 112: Do you prefer cloudy or sunny days? Sunny. 113: Someone you’d like to kiss or cuddle right now: Kevin. 114: Favorite cloud type: A cumulonimbus cloud because they’re big and they look fluffy. 115: What color do you wish the sky was? Pink. You know, like when the sun sets? Or blue. Blue is calming to me. 116: Do you have freckles? I wish! 117: Favorite thing about a person: I think people in general are interesting so. 118: Fruits or vegetables? Fruits. 119: Something you want to do right now: Eat. 120: Is the ocean or sky prettier? The ocean. 121: Sweet or sour foods? Sweet. 122: Bright or dim lights? In between. 123: Do you believe in a certain magical creature? No. I don’t know. 124: Something you hate about Tumblr: I don’t really think about that to be honest. 125: Something you love about Tumblr: I find it relaxing. 126: What do you think about the least? I don’t know. 127: What would you want written on your tombstone? No idea. 128: Who would you like to punch in the face right now? No one. 129: What is something you love but also hate about yourself? Hm… Maybe how much I care about certain people/things. < Truth. 130: Do you smile with your teeth showing for pictures? Rarely. 131: Computer or TV? Computer. 132: Do you like roller coasters? They’re alright. 133: Do you get motion sickness or seasickness? Yeah, a bit. 134: Are your ears free or attached? I think they’re attached? What. 135: Do you believe in karma? Yes. 136: On a scale of 1-10, how attractive would you say you are? Mm, 3. 137: What nicknames do you have/have had? Many. 138: Did you have any pretend or imaginary friends? I did. 139: Have you ever seen a therapist/shrink? Yeah. 140: Would you say you are a good or bad influence to others? Good. 141: Do you prefer giving or receiving gifts/help? Giving. 142: What makes you angry?: People can make me angry. 143: How many languages do you speak fluently? Just English. 144: Do you prefer boys, girls, and/or non-binaries? Boys. 145: Are you androgynous? No. I don’t think I am, anyway.  146: Favorite physical thing about yourself: I don’t know. I don’t really have a lot to like about myself. 147: Favorite thing about your personality: My willingness to understand, respect and empathise.  148: Name three people you would like to talk to right now in person. No one in particular. My family, if anyone. 149: If you could go back into time and live in one era, which would you choose? I don’t know. The 50s or 60s, maybe. 150: Do you like BuzzFeed? Yeah, I do. 151: How did you meet your spouse/girlfriend/boyfriend/partner? Through friends, at a “gathering”. 152: Do you like to kiss others’ foreheads or hands for platonic reasons? No. I don’t. 153: Do you like to play with others’ hair? Not really. 154: What embarrasses you? Because I empathise a lot, I get secondhand embarrassment a lot too. So, there you go. 155: Something that makes you nervous/anxious: Every fucking thing. 156: Biggest lie you have ever told: I can’t think of anything right now. 157: How many people are you following? Not many. 158: How many posts do you have on your blog(s)? This blog? 730 when I post this one. 159: How many drafts do you have on your blog(s)? None. 160: How many likes do you have on your blog(s)? I don’t know. 161: Last time you cried and why: A few days ago. I don’t want to go into it. 162: Do you have long or short hair? Long-ish. 163: Longest your hair has ever been: Up to my bottom. 164: Why do you like, dislike, or have neutral feelings about religion? I don’t really have an opinion at all, I guess. Um. I don’t know. I just don’t care nor think about it. 165: Do you really care how the universe and world was created? I mean. It would be interesting to know, but... I don’t care. 166: Do you like to wear makeup? Yes, I do. 167: Can you stand on your hands or head for more than thirty seconds? No. 168: Did you answer the questions you were asked truthfully? Yes, sir.

[13flowersandfoxes]

1-169 because I saw your tag and I'm a reasonable man

1: How tall or short do you wish you were?Idk I like being tall until there are no tall guys who want to date me 
2: What’s your dream pet? (Real or not)Does that include realistically? Cause I'd love to have a fox or a snow leopard but foxes are expensive and there's no domestic snow leopards I've heard of. 
3: Do you have a favorite clothing style?I just wear what strikes me. I'm kinda all over the place style wise but I'm very true to myself. 
4: What was your favorite video game growing up?Soul Calibur II
5: What three things/people do you think of most each day:My best friend, my cat, food?
6: If you had a warning label, what would yours say?Crazy bitch approach with caution
7: What is your opinion on [insert person/thing here]?
8: What is your Greek personality type? [Sanguine, Phlegmatic, Choleric, or Melancholic]I don't remember these well enough to say
9: Are you ticklish?... 
10: Are you allergic to anything?Morphine 
11: What’s your sexuality?Bi
12: Do you prefer tea, coffee, or cocoa?Not coffee
13: Are you a cat or dog person?Both
14: Would you rather be a vampire, elf, or merperson?Elf. Especially a Tolkien elf. 
15: Do you have a favorite Youtuber?Not really
16: How tall are you?5'11
17: If you had to change your name, what would you change it to?Billie
18: How much do you weigh? [Only ask this if you know the user doesn’t mind!]250
19: Do you believe in ghosts/spirits?In a way yes
20: Do you like space or the ocean more?Ocean. But both scare me in a way 
21: Are you religious?Yes
22: Pet peeves?People chewing loud or leaving cabinets open
23: Would you rather be nocturnal or diurnal [opposite of nocturnal]?Nocturnal 
24: Favorite constellation?Orion
25: Favorite star?Betelgeuse 
26: Do you like ball-jointed dolls?No
27: Any phobias or fears?Being alone
28: Do you think global warming is real?Believe pollution is an issue. But not sure I trust politicians and scientists with an agenda when other scientists are saying they are wrong. And they're trying to say they're stupid or crazy or should be killed for disagreeing. I just have a hard time trusting that people who do that are actually right. 
29: Do you believe in reincarnation?No
30: Favorite movie??
31: Do you get scared easily?No
32: How many pets have you own in your lifetime?3
33: Blog rate? [You’ll rate the blog of the one who’s asking.]7
34: What is a color that calms you?Green 
35: Where would you like to travel and/or live?Germany 
36: Where were you born?California 
37: What is your eye color?Green
38: Introvert or extrovert?Introvert
39: Do you believe in horoscopes and zodiacs?No but I think they're harmless fun. I don't get why some people freak out like they're so bad to talk about hypothetically. I just think it's fun. 
40: Hugs or kisses?Both. Both is good
41: Who is someone you would like to see/visit right now?My cat and my best friend(s). And that's gonna be happening soon as I'm on the plane right now. 
42: Who is someone you love deeply?My cat :P
43: Any piercings you want?Not really. Maybe my lobes. 
44: Do you like tattoos and piercings?Not excessively. But I love beautiful pieces of art and can really appreciate the art that goes into both. 
45: Do you smoke or have you eiver done so?No
46: Talk about your crush, if you have one!Ugh he's a writer loves cats one of my best friends, a little eccentric, and he's genuinely understanding. We've both gone through some hard shit and we trust each other in that
47: What is a sound you really hate?Coughing. People talking obnoxiously loud in public places that are generally quiet. I can't think of anything more specific okay I'm on a plane right now. 
48: A sound you really love?My cat. Also my aunts cat cause he can't meow right he sounds like a dying squeaky toy and I can't stop laughing
49: Can you do a backflip?No
50: Can you do the splits?Almost
51: Favorite actor and/or actress?Dunno. Like Winona Ryder and Angelina Jolie to name a couple random ones. 
52: Favorite movie?Too manyyyy
53: How are you feeling right now?Tired and a little dizzy. I have a headache right now :(
54: What color would you like your hair to be right now?I'm happy with it being red. I'd like it to look slightly more orange though
55: When did you feel happiest?I'm not sure. Happy things seem tainted now. 
56: Something that calms you down?Animals 
57: Have any mental disorders? [Only ask this if you know the user doesn’t mind!]Bpd, possibly along with bipolar type 2 as suspected by my psychiatrist. 
58: What does your URL mean?I feel like I was something that had potential to be beautiful and good but it's just broken and painful now. 
59: What three words describe you the most?Crazy. Weird. Catlike. 
60: Do you believe in evolution?Yes. 
61: What makes you unfollow a blog?Being constantly douchey, or just annoying the shit out of me. I'm pretty nice though generally, I follow all sorts of people and I tend to like having variety in who I follow so I don't feel like I'm hearing the same shit over and over. It's a bit dull
62: What makes you follow a blog?Interesting content. Seems nice. Especially if they follow me first 
63: Favorite kind of person:Idk someone nice and funny that I can talk to easily. 
64: Favorite animal(s):I've said this so many times lol
65: Name three of your favorite blogs.Kellyann Saint Louis???
66: Favorite emoticon:💜💜💜💜 or 😊😊
67: Favorite meme:I miss the bad audition songs one. But I do have a special place in my heart for screencaps+tumblr posts/onion articles 
68: What is your MBTI personality type?Infj
69: What is your star sign?Sagittarius 
70: Can your dog roll over on command, if you have a dog?Nope. She can sit and that's about it. She's not very bright. 
71: What outfit out of all your clothes do you like to wear the most?Jeans and floral/sheer top
72: Post a selfie or two?Make separate post
73: Do you have platform shoes?Yeah
74: What is one random but interesting fact about yourself?I have webbed toes
75: Can you do a front flip?No
76: Do you like birds?To look at, but I probably wouldn't ever have one as a pet
77: Do you like to swim?Yes
78: Is swimming or ice skating more fun to you?Swimming cause I'm very new to ice skating I've done it twice and once was on crappy skates that really hurt my feet. The other time I was doing circles okay following the wall
79: Something you wish didn’t exist:The dark shit I've seen on here
80: Some thing you wish did exist:A special hell for people who do that shit
81: Piercings you have?My daiths
82: Something you really enjoy doing:Cooking sometimes
83: Favorite person to talk to:My best friend 
84: What was your first impression of Tumblr?Well I remember in middle school when it was brand new everyone was getting one and I tried it and I was just like How the Fuck do I do anything then the next time I had heard Things and knew somewhat what to expect 
85: How many followers do you have?280 ish
86: Can you run a mile within ten minutes? Lol no
87: Do your socks always match?I'm wearing one sock with cats and one black sock. Does that answer that well enough for you? Lol
88: Can you touch your toes and keep your legs straight completely?I think so I don't remember 
89: What are your birthstones?Topaz
90: If you were an animal, which one would you be?My friend used to say I'm part cat. Maybe fox cause they're basically half cat half dog. 
91: If a flower could aesthetically represent you, what kind would it be?Orchid
92: A store you hate?Torrid cause I spend way too much shopping there I can't walk in without buying something 
93: How many cups of coffee can you drink in one day?0
94: Would you rather be able to fly or read minds?Fly
95: Do you like to wear camo?No
96: Winter or summer?Winter
97: How long can you hold your breath for??
98: Least favorite person?This nightmarish girl who was homeschooled and was like a fundie Christian Mormon afraid of doctors and lesbians and gum and Twinkies (im literally not exaggerating) and was just loud and obnoxious and annoying in high school. 
99: Someone you look up to:Not sure. 
100: A store you love?Torrid
101: Favorite type of shoesOxfords
102: Where do you live?Utah
103: Are you a vegetarian or vegan? If so, why?No
104: What is your favorite mineral or gem?Amethyst. Also there's this green stone I have somewhere in my house I got from a roadside shop in Zion it's so pretty it's like quartz looking. I can't remember what it was. But it's pretty 
105: Do you drink milk?Not really
106: Do you like bugs?Not particularly 
107: Do you like spiders?^^^^
108: Something you get paranoid about?People hating me/being bothered by me
109: Can you draw:No
110: Nosiest question you have ever been asked?Got an anon once I deleted asking my favorite things to do when I'm having sex. That was probably it that wasn't called for. 
111: A question you hate being asked?"Are you working or in school right now?"
112: Ever been bitten by a spider?Maybe. Woken up with lots of bug bites in my day, most all of them mosquitoes but some not
113: Do you like the sound of waves at the beach?Yeah
114: Do you prefer cloudy or sunny days?Cloudy
115: Someone you’d like to kiss or cuddle right now:Idk
116: Favorite cloud type:? I just like clouds
117: What color do you wish the sky was?Idk I'm fine with it being blue but I like purple sunsets
118: Do you have freckles?No :(
119: Favorite thing about a person:Eyes or the sort of things they find funny
120: Fruits or vegetables?Fruits
121: Something you want to do right now:See my damn cat
122: Is the ocean or sky prettier?Yes
123: Sweet or sour foods?Spicy
124: Bright or dim lights?Depends 
125: Do you believe in a certain magical creature?No
126: Something you hate about Tumblr:People
127: Something you love about Tumblr:People
128: What do you think about the least?? If I thought about it then it wouldn't be thought of least
129: What would you want written on your tombstone?Not sure. I'm tempted to go with something morbid like memento mori just to be a little shit forever
130: Who would you like to punch in the face right now?Idk
131: What is something you love but also hate about yourself?My boobs
132: Do you smile with your teeth showing for pictures?I try not to. But I end up looking angry
133: Computer or TV?Both
134: Do you like roller coasters?Yeah
135: Do you get motion sickness or seasickness?Yes
136: Are your ears lobed or attached?Lobed
137: Do you believe in karma?No
138: On a scale of 1-10, how attractive would you say you are?5
139: What nicknames do you have/have had?I have one friend who used to call me Hanukkah, then brosef calls me hanners 
140: Did you have any pretend or imaginary friends?No
141: Have you ever seen a therapist/shrink?Lol yes
142: Would you say you are a good or bad influence to others?Idk I try to be a good influence but some people's parents have said I'm bad .... so idk
143: Do you prefer giving or receiving gifts/help?Both!
144: What makes you angryIdk just bullshit lol
145: How many languages do you speak fluently?1
146: Do you prefer boys, girls, and/or non-binaries?Boys
147: Are you androgynous?Nope
148: Favorite physical thing about yourself:Eyes or lips
149: Favorite thing about your personality:Idk I'm friendly
150: Name three people you would like to talk to right now in person.My best friend, my girl best friend, and ?? My sister maybe
151: If you could go back into time and live in one era, which would you choose?I can't choooooose
152: Do you like BuzzFeed?For dumb little shit like dog stuff or "boys try this" yeah I think it's fun but if you think it's actually journalism you're sorely mistaken
153: How did you meet your spouse/girlfriend/boyfriend/partner? [If you have one.]
154: Do you like to kiss others’ foreheads or hands for platonic reasons?No. cheeks yes. 
155: Do you like to play with others’ hair?Yes
156: What embarrasses you?Lots of things. 
157: Something that makes you nervous/anxious:Talking to people. 
158: Biggest lie you have ever told:Idk
159: How many people are you following?700 ish
160: How many posts do you have on your blog(s)?Idk
161: How many drafts do you have on your blog(s)??
162: How many likes do you have on your blog(s)?Idk
163: Last time you cried and why:Idk
164: Do you have long or short hair?It's medium but I wants it to be long again I miss it being long even if it's a lot of work
165: Longest your hair has ever been:past my chest
166: Why do you like, dislike, or have neutral feelings about religon?I say if something helps people and doesn't harm others in their lives let them. 
167: Do you really care how the universe and world was created?Not that much TBH
168: Do you like to wear makeup?Yes
169: Can you stand on your hands or head for more than thirty seconds?Never tried but probably not

[its-lifestyle]

Rubee Ahmad and Sharin Abdul Rahman are always preoccupied with their two sons, as all parents are. But their burden is much heavier than most as their worries have to do with keeping their sons alive, literally.

Their sons, Ahmad Adam and Muhammad Arman, have Hunter Syndrome or Mucopolysaccharidosis (MPS) Type 2, a rare genetic disorder affecting one in about 150,000 children in Malaysia.

There is no cure for MPS Type 2. Enzyme replacement therapy (ERT) is the only treatment available to reduce symptoms and improve the well-being of those with the disease.

Treatment, however, is very expensive, and unaffordable to most families.

“Adam and Arman need to go for enzyme replacement therapy once a week. Each treatment costs about RM15,000 for both boys and they need four treatments a month. It comes up to about RM60,000,” explains Shahrin.

Arman (left) is the more adventurous of the two. Big brother Adam is calm and loves playing games on his father’s phone.

Thankfully, with the help of the hospital and NGOs like the Malaysia Lysosomal Diseases Association (MLDA), Rubee and Sharin are receiving funding from Zakat Selangor, ICAP (an international humanitarian healthcare fund) and the pharmaceutical company which will cover the boys’ treatments until May 2020.

Beyond that, they don’t know if they will have funding to continue the ERT.

“We are very thankful that we have this funding. But we need to start thinking about how we will afford treatment after May,” says Shahrin.

MPS Type 2 is a Lysosomal Storage Disease (LSD) caused by a genetic defect, a broken X-chromosome, and it is passed from mothers almost exclusively to sons.

Children who have it are unable to produce the enzyme that allows their bodies to get rid off and recycle cellular waste. The accumulation of this waste in the cells causes progressive damage to the body and starts to affect the organs, impairing physical and mental development.

Rubee, Sharin, Adam and Arman got to celebrate Hari Raya in both their parents’ kampung this year.

Because it is a progressive disease, children with MPS Type 2 often seem normal when they are born and will only start displaying symptoms when they are as young as 18 months.

Children with the disease often lose the ability to talk, walk and even eat.

Most don’t live to see adulthood – their average lifespan is between 10 and 20 years.

Adam was five when he was diagnosed. By that time, he had many of the symptoms – coarse facial features, an enlarged head, broad nose, chest and back deformities as well as claw-like hands. He had breathing difficulties and sleep apnea, causing him to wake up in the middle of the night, unable to breath. His limbs were stiff, making it difficult for him to move.

He was also smaller than children his age.

Taking the boys out is a challenge for Rubee and Sharin but they want Adam and Arman to enjoy their childhood as much as they can. Photo: RUBEE AHMAD

Arman was diagnosed when he was two and because he received treatment earlier, he didn’t have as many symptoms. Some children with MPS Type 2 only suffer physical impairments but Adam and Arman’s condition has also caused cognitive impairments: though they understand, they aren’t able to talk.

Because the disease is so rare, it took a while for the boys to be diagnosed.

“We hadn’t even heard of this disease before. It’s really rare so what are the chances that both my sons have it? When Adam was born, he was a very cute baby. He was a blessing; he completed our lives, really. Then as he grew up, he wasn’t reaching his developmental milestones. He wasn’t able to speak or walk.

“Adam was also constantly getting the flu. We kept having to take him to clinics and hospitals but none of the doctors diagnosed him with MPS Type 2. We both have siblings who are doctors but they too never diagnosed him with this disease,” shares Rubee.

It was during a visit to the Sungai Buloh hospital for Adam’s occupational therapy that a doctor suggested they test him for Hunter Syndrome.

“It took six months for Adam to get diagnosed because his blood and tissue samples had to be sent to Australia to be tested.

That was the longest and hardest six months of our lives. It felt as if I was living a nightmare. I went to work every day but I don’t think I did much work. I’d spend my time online, reading up about the disease and crying as I read about the seriousness of this disease. My heart sank as I read that there is no cure for this disease and that most patients don’t reach adulthood.

Since starting treatment, Arman (left) and Adam’s condition has improved significantly. Adam doesn’t wake up choking in the middle of the night any more and he walks a lot better too.

“Macam mau mati, kot (I felt like dying). It’s the worst thing to have to imagine burying your own child,” shares Rubee, 37.

One day at a time

Adam turns 10 this year and his brother, six. For Rubee and Sharin, every day they get to be with their boys is a blessing.

“We don’t know how long they have and so every day that they are well is a milestone,” says Rubee.

Adam is the calmer of the two, sitting quietly on the sofa, playing games on his father’s mobile phone as his younger brother, who can hardly keep still, flits from the carpet in the hall to the sofa to the dining table where his mother has laid out some drinks in their home in Petaling Jaya, Selangor.

“Look at him,” says Rubee, smiling, nodding her head towards Arman. “He’s the adventurous one, obviously.” Although the boys can’t talk, they are very affectionate and seek out their parents for cuddles.

“My boys have been on the treatment for two years and alhamdulillah, we can see some improvements. Adam breathes better and doesn’t wake up choking at night any more; his limbs are not so stiff and he can walk better now (albeit on tip toe). The improvements in Arman are more apparent because he started on the treatment at a younger age. He walks a lot better than his older brother and has overall fewer symptoms,” says Rubee.

Nevertheless, caring for the two boys is all-consuming.

Although the boys are 10 and six years old, they need to be bathed and watched constantly. It’s challenging, says Sharin, but also rewarding.

“It is challenging,” shares Shahrin. “Every family goes through challenges … this is our challenge to bear. It’s hard enough bringing up normal boys, but children like them requires extra effort because we can never be complacent.

“It can get frustrating sometimes but then we look at our boys and how they love us consistently. They really are a blessing and we must make sure we are strong and keep ourselves healthy and fit because we cannot afford not to be there for them.

They aren’t able to do things for themselves and so it’s like taking care of two babies. Sometimes I wonder why I am so tired all the time and then I realise it’s because we are constantly looking after them,” says the 40-year-old father.

Because caring for the boys requires both of their full attention all of the time, they rarely go out.

“It’s sometimes just too difficult. Sometimes we go out to eat but the stares we get can be quite hurtful,” shares Rubee.

For Hari Raya though, the family goes back to both Johor (where Rubee is from) and Kelantan (Shahrin’s kampung).

“We have a strategy: we leave in the wee hours of the morning when traffic is not so bad and the boys are still asleep. That’s our secret. It was my idea!” she says proudly.

Both Rubee and Shahrin work with McDonald’s Malaysia – she works in Human Resources and he is in the IT department. Shahrin, shares Rubee, has been her backbone throughout their ordeal – giving her the strength to be there for their boys.

“He is calm and strong. He’s very hands-on. Without him, I don’t think I would be able to cope. There are still moments when I break down but he is always there for me to lean on.

“MPS Type 2 is an X-linked disease, which means I am the carrier. But he has never once blamed me for passing this disease down to our boys. Something like this can break a relationship because things can slip out, you know? But Shahrin has never once said that this was my fault,” says Rubee, her voice choked with emotion.

It took a while for Rubee to accept that both her boys have a rare and fatal disease.

A costly affair

Funding, says MLDA president Lee Yee Seng, is the biggest challenge for families of children with rare diseases. In the 2019 budget, the government allocated RM16mil for rare diseases, of which RM10mil is for patients with LSD.

However, with the exorbitant cost of treatment (which can reach up to RM1mil per child per year), this funding is grossly insufficient, and most families still have to depend on donations from charities, fundraising by NGOs, crowd-funding or compassionate drug programmes from pharmaceutical companies in order to get access to treatment.

“It’s a very lonely journey for parents. If you have to fundraise, you have to do it on your own, largely. Joining associations like MLDA will help as we give all families who are our members RM1,500 aid a year to help with their expenses. We also help with fundraising and support.

“We also raise awareness about rare diseases among other parents, the public and health practitioners. Often, children with rare diseases are kept at home and are unseen. But they deserve to be seen and to have a fighting chance,” says Lee.

For Rubee, joining an association like MLDA gave her family the support they needed in coping with the disease.

“Parents of children with rare diseases like MPS Type 2 need support, not just financially but emotionally too. We go through the same pain seeing our child grow and not knowing when they will get their angel wings. It’s just good to be able to be there for one another. We also need to raise awareness about rare diseases so that these children can have a chance, which they deserve too,” says Rubee.

The Ronald McDonald House of Charity Malaysia is trying to give this family a chance by raising funds through an online campaign, in NGOhub platform. To contribute, go to bit.ly/fundraisingforHunterSyndrome

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[ladyofthecampfires]

ALL THE QUESTIONS!!!! :D!

We’re so annoying

1: How tall or short do you wish you were?

I wish I was a bit taller, I guess? 5′7″? 5′8″?

2: What’s your dream pet? (Real or not)

I would like a snake but I don’t know if I would be able to care for it properly. Otherwise I would love a wolfdog or a husky!!!!!

3: Do you have a favorite clothing style?

I dunno about style, but my fav outfit is my Frank shirt and a red and black plaid button down and skinny jeans. It makes me feel punk :)

4: What was your favorite video game growing up?

I’m not sure, there were a lot. Maybe Sonic Adventure Battle 2 or LoZ: Wind Waker. I loved watching my mom and brother play Resident Evil 4 but wasn’t good enough to play it myself haha.

5: What three things/people do you think of most each day:

@timelordinvalinor and food and the void that is my future

6: If you had a warning label, what would yours say?

Approach only with good reason, she doesn’t want to talk to you

7: What is your opinion on [insert person/thing here]?

I feel like the asker was supposed to insert their topic of choice so I guess I won’t answer this one haha.

8: What is your Greek personality type? [Sanguine, Phlegmatic, Choleric, or Melancholic]

I think I’m choleric if I remember correctly? Or maybe phlegmatic I don’t know.

9: Are you ticklish?

Just a little.

10: Are you allergic to anything?

Not that I know of, thankfully.

11: What’s your sexuality?

Bisexualllll

12: Do you prefer tea, coffee, or cocoa?

I like all of them but coffee, tea and cocoa in that order.

13: Are you a cat or dog person?

Both!!! I like cats a tiny bit more because of their independence.

14: Would you rather be a vampire, elf, or merperson?

Oh an elf definitely.

15: Do you have a favorite Youtuber?

I dunno if Griffin McElroy counts as a youtuber but I’m going to go with him.

16: How tall are you?

5′5″

17: If you had to change your name, what would you change it to?

Hmm. I don’t know. Maybe Aurelia? Yeah, I’m Roman trash.

18: How much do you weigh? [Only ask this if you know the user doesn’t mind!]

125?? Last time I went to the doctor haha.

19: Do you believe in ghosts/spirits?

Yah

20: Do you like space or the ocean more?

Space!!

21: Are you religious?

Just barely…

22: Pet peeves?

When people refuse to listen to the other side of the argument or when people play devil’s advocate just to get someone riled up

23: Would you rather be nocturnal or diurnal [opposite of nocturnal]?

As much as I wish I could be nocturnal, I think I would need to be diurnal.

24: Favorite constellation?

Ursa Minor?? I dunno. I am not adept at constellations.

25: Favorite star?

Polaris, I’m boring.

26: Do you like ball-jointed dolls?

No…..???

27: Any phobias or fears?

Emetophobia :///// When someone throws up I freak the fuck out. I think it’s because I watched The Sixth Sense when I was really little and there’s that one scene…. I actually very much dislike most bodily functions. 

28: Do you think global warming is real?

It is quite real.

29: Do you believe in reincarnation?

I like the idea of it. But I honestly don’t think I’ll ever really know until I get there.

30: Favorite movie?

The Fifth Element!!!

31: Do you get scared easily?

I would say average. Not super easily but I do get scared sometimes.

32: How many pets have you own in your lifetime?

8?

33: Blog rate? [You’ll rate the blog of the one who’s asking.]

999999/10

34: What is a color that calms you?

Pale green for some reason

35: Where would you like to travel and/or live?

Ireland and I would love to go back to Rome.

36: Where were you born?

Texas

37: What is your eye color?

Dark brown

38: Introvert or extrovert?

Introvert all the way

39: Do you believe in horoscopes and zodiacs?

Not really but they’re fun to read!

40: Hugs or kisses?

Both are great but kisses are very very good

41: Who is someone you would like to see/visit right now?

@timelordinvalinor ?? 

42: Who is someone you love deeply?

My mom. I would probably be dead without her.

43: Any piercings you want?

I don’t really care about piercings.

44: Do you like tattoos and piercings?

Tattoos yes!!!!! Piercings, I don’t have an opinion one way or another.

45: Do you smoke or have you eiver done so?

I assume this means cigarettes and nope.

46: Talk about your crush, if you have one!

*furious blushing*

47: What is a sound you really hate?

I can’t think of any right now.

48: A sound you really love?

Guitar!

49: Can you do a backflip?

Nope

50: Can you do the splits?

Nope

51: Favorite actor and/or actress?

Don’t have one

52: Favorite movie?

The Fifth Element

53: How are you feeling right now?

Tired

54: What color would you like your hair to be right now?

I like my hair the color it is

55: When did you feel happiest?

It used to be at concerts but I don’t know any more

56: Something that calms you down?

Listening to music

57: Have any mental disorders? [Only ask this if you know the user doesn’t mind!]

Gotta love that social anxiety

58: What does your URL mean?

Title of a Frank Turner song

59: What three words describe you the most?

Quiet, funny, caring

60: Do you believe in evolution?

Yes

61: What makes you unfollow a blog?

Not interested in the content anymore

62: What makes you follow a blog?

Good content

63: Favorite kind of person:

Someone who is kind and understanding and tries to make the world around them a better place

64: Favorite animal(s):

Cats, wolves

65: Name three of your favorite blogs.

@timelordinvalinor @awkwardlytimednosebleed @littlerogueprincess

66: Favorite emoticon:

Don’t have one

67: Favorite meme:

Don’t have one. My favorite vine though is that one with the guy stuck in his kayak and he’s like “Saruhhhh help meeeee” cracks me up EVERY TIME

68: What is your MBTI personality type?

ISTJ

69: What is your star sign?

Taurus

70: Can your dog roll over on command, if you have a dog?

No, they’re both idiots haha

71: What outfit out of all your clothes do you like to wear the most?

Oh I answered this earlier. See #3

72: Post a selfie or two?

Mmmmmm I don’t look great right now haha

73: Do you have platform shoes?

No

74: What is one random but interesting fact about yourself?

I can play bass guitar??

75: Can you do a front flip?

Nope

76: Do you like birds?

They’re okay.

77: Do you like to swim?

Sure

78: Is swimming or ice skating more fun to you?

Ice skating!

79: Something you wish didn’t exist:

Racists

80: Some thing you wish did exist:

Dragons

81: Piercings you have?

None

82: Something you really enjoy doing:

Playing video games

83: Favorite person to talk to:

@timelordinvalinor

84: What was your first impression of Tumblr?

I joined like two days before Mishapocalypse. I was like “what the fuck is this”

85: How many followers do you have?

102

86: Can you run a mile within ten minutes?

Doubtful, maybe around 10 minutes

87: Do your socks always match?

Yes

88: Can you touch your toes and keep your legs straight completely?

Yes

89: What are your birthstones?

Diamond

90: If you were an animal, which one would you be?

A wolf maybe

91: If a flower could aesthetically represent you, what kind would it be?

Daisy?

92: A store you hate?

Not a big walmart fan

93: How many cups of coffee can you drink in one day?

I’m sure I could drink a lot but I don’t think I’ve ever had more than 2

94: Would you rather be able to fly or read minds?

Fly

95: Do you like to wear camo?

No

96: Winter or summer?

Winter

97: How long can you hold your breath for?

Not very long

98: Least favorite person?

Donald Trump?

99: Someone you look up to:

Meg White

100: A store you love?

I like Whole Foods

101: Favorite type of shoes

Converse?

102: Where do you live?

Texas

103: Are you a vegetarian or vegan? If so, why?

I’ve considered it in order to be more healthy, but no

104: What is your favorite mineral or gem?

Fire opal or black opal is pretty damn cool

105: Do you drink milk?

Not regularly

106: Do you like bugs?

Not really

107: Do you like spiders?

I appreciate them from afar

108: Something you get paranoid about?

My future

109: Can you draw:

Nope

110: Nosiest question you have ever been asked?

I don’t know

111: A question you hate being asked?

Why are you so quiet?

112: Ever been bitten by a spider?

Don’t think so

113: Do you like the sound of waves at the beach?

Yeah!

114: Do you prefer cloudy or sunny days?

Depends on my mood

115: Someone you’d like to kiss or cuddle right now:

116: Favorite cloud type:

There was this one time in middle school where the clouds literally looked like mountains. I don’t know what kind of cloud that was but totally that

117: What color do you wish the sky was?

Gray skies are cool?

118: Do you have freckles?

They aren’t super dark but yes so many all over lol

119: Favorite thing about a person:

Their smile or laugh

120: Fruits or vegetables?

Fruit

121: Something you want to do right now:

Be at home

122: Is the ocean or sky prettier?

Ocean

123: Sweet or sour foods?

Sweet

124: Bright or dim lights?

Dim

125: Do you believe in a certain magical creature?

The fair folk? I guess?

126: Something you hate about Tumblr:

Nazis and terfs

127: Something you love about Tumblr:

All the cool artists

128: What do you think about the least?

How the heck should I know

129: What would you want written on your tombstone?

No idea

130: Who would you like to punch in the face right now?

A nazi or Donald Trump or both. I have two hands.

131: What is something you love but also hate about yourself?

I am a very naive person by nature. I think that makes me more optimistic about people but then I get taken advantage of :))))

132: Do you smile with your teeth showing for pictures?

Sometimes

133: Computer or TV?

Computer

134: Do you like roller coasters?

Not really

135: Do you get motion sickness or seasickness?

Yes :(

136: Are your ears lobed or attached?

Attached

137: Do you believe in karma?

No

138: On a scale of 1-10, how attractive would you say you are?

4? 5?

139: What nicknames do you have/have had?

Rach, Rachie, my parents call me “petey” sometimes like sweet pea

140: Did you have any pretend or imaginary friends?

One named Ditto when I was like 4. I think I watched too much Pokemon.

141: Have you ever seen a therapist/shrink?

Once

142: Would you say you are a good or bad influence to others?

Good

143: Do you prefer giving or receiving gifts/help?

Both

144: What makes you angry

Ignorant people, rude people, people

145: How many languages do you speak fluently?

1

146: Do you prefer boys, girls, and/or non-binaries?

I don’t think I have a preference really

147: Are you androgynous?

I try to be, but I’m not very good at it

148: Favorite physical thing about yourself:

My hair color

149: Favorite thing about your personality:

I try to be really caring

150: Name three people you would like to talk to right now in person.

These are repeating

151: If you could go back into time and live in one era, which would you choose?

Early 1920s would be interesting. Or ancient Rome!

152: Do you like BuzzFeed?

Sometimes 

153: How did you meet your spouse/girlfriend/boyfriend/partner? [If you have one.]

Don’t have one

154: Do you like to kiss others’ foreheads or hands for platonic reasons?

No

155: Do you like to play with others’ hair?

Yeah!

156: What embarrasses you?

Everything

157: Something that makes you nervous/anxious:

Also everything

158: Biggest lie you have ever told:

Dunno

159: How many people are you following?

254

160: How many posts do you have on your blog(s)?

4,059

161: How many drafts do you have on your blog(s)?

2

162: How many likes do you have on your blog(s)?

2,406

163: Last time you cried and why:

a few weeks ago when I learned my old orchestra teacher died

164: Do you have long or short hair?

Short

165: Longest your hair has ever been:

To the middle of my back

166: Why do you like, dislike, or have neutral feelings about religon?

I sort of like it because it makes people feel grounded and loved in ways they might not be able to get otherwise

167: Do you really care how the universe and world was created?

Not really

168: Do you like to wear makeup?

No

169: Can you stand on your hands or head for more than thirty seconds?

No

170: Did you answer the questions you were asked truthfully?

I tried to