Living with retinal dystrophy, Anisah | In The Spotlight - video Dailymotion

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“Although I might look confident on stage, I am very scared of going up by myself.” 12-year-old Anisah Daaniys, diagnosed with retinal dystrophy, shares her journey of growing up with limited vision. A student and vocalist for the Purple Symphony, she speaks about her experiences learning music through Braille, performing on stage, and her dreams of becoming a vocal teacher. Despite her challenges, Anisah's love for music and the support of her family drive her to pursue her passions with determination and hope.   Watch more: https://www.asiaone.com/video

Transcript

00:00And when the new things entered the house, like a piano, a computer table,

00:05they would let me feel so I won't crash into it when I'm walking.

00:14My name is Anissa, I am 12 this year and I am a student and

00:20vocalist for the Purple Symphony.

00:22I was diagnosed with retinal dystrophy when I was 3.

00:26I heard from my parents that I wasn't responding to toys

00:29dangling in front of me.

00:30And now I can see lights and shadows.

00:34For example, when a sighted person closes their eyes

00:38and then they're looking at the sun,

00:41and if someone blocks the sun from their face with their hand

00:47or another object,

00:48they can see the shadow of the object but they won't know what the object is.

00:52That is how my condition is like.

00:54I'm not sure whether it will stay the same or

00:57deteriorate over the years.

00:59So I've been living in this house since I was 3.

01:03So I'm quite familiar with the house.

01:05And my parents will make me feel the wall and stuff.

01:09And I've bumped into the wall a few times still so

01:12it helps me to remember a wall is there.

01:16And when the new things entered the house, like a piano, a computer table,

01:21they would let me feel so I won't crash into it when I'm walking.

01:25When I was young, I was homeschooled.

01:29The way I learn in class is very different.

01:32The teachers from IC2 Prep House will come and teach me some stuff.

01:37They will bring a small book, but they are braille books.

01:40And we read with our fingers.

01:42And then there are pictures and diagrams.

01:45And then there's a braille paragraph on top so I will know what the picture is.

01:51Let's say it's a cracked egg,

01:52so on the top of the page, they will put cracked egg and then you can feel the diagram.

01:57I joined Lighthouse School in 2019.

02:00And that year, we learned braille most of the year.

02:05And then 2020, I was still in Primary 1.

02:10That's when we did more work than braille.

02:13That's why I am 12 this year and still in P5.

02:17With that being said, I'll be taking my PSLE next year like

02:21any other Primary 6 kids.

02:23Apart from school, I'm also pursuing music.

02:27So I will have school on Monday, Tuesday, Wednesday, Thursday, Friday.

02:32And then I will have rehearsals with the Purple Symphony

02:37on Saturday from 9 to 12pm.

02:41And then I will have music lessons on either Saturday or Sunday.

02:48Even though it sounds very packed,

02:50I am happy because I'm doing what I like to do.

02:53So since I was young, I was exposed to music.

02:57I would listen to Taylor Swift and other singers.

03:00And I also like to copy out melodies on the organ slash keyboard we had once.

03:08So my very first song I managed to master was Twinkle Twinkle Little Star.

03:14I remember back then, I was 4 or 5 years old.

03:17So I would listen to the YouTube video

03:21and then I would go to the piano and see whether it matches.

03:25So in 2019, when I joined Lighthouse, I joined the Choir CCA.

03:30So my music school organises this concert annually.

03:36It's called Songbirds.

03:37It happens in August every year.

03:40And my now music teacher was the choir instructor back then.

03:46That's how I got into the Purple Symphony.

03:48The Purple Symphony is Singapore's largest inclusive orchestra.

03:52That year, we were invited to perform at the Esplanade

03:56and that was my very first time performing in the Esplanade.

04:01I've been performing every year since then.

04:04And it's the sixth year of me being in the Purple Symphony

04:09and now, actually, we are rehearsing for our 10th anniversary concert.

04:17If my teacher wants me to learn a song

04:20she will repeat line by line and then she will play a melody

04:26so I can get a sense of how it sounds.

04:28Then she will send me a Word PDF

04:30and then when I go home, I can refer to my phone for the words

04:35and then I can type it with my braille.

04:38On the 7th of March

04:40I performed a Chinese song called

04:42隐形的翅膀

04:44and I actually learned it last year

04:47but I only did the first verse.

04:49So my teacher found it

04:51and she was like,

04:52OK, prepare this song

04:53and I was like,

04:54what?

04:54She sent me the PDF in Hanyue Pinyin

04:58and then she will say the lines

05:00and then I have to copy how it sounds like.

05:03She will work on my technique

05:06and how to express emotion in the song.

05:09Where to go soft, where to go loud.

05:11Since I'm learning from this format

05:14I've been exposed to quite a number of songs in foreign languages

05:21like Heidenröslein, which I performed in 2022

05:25and I also sang Anak.

05:27It's a Filipino song.

05:29I sang it for Mother's Day concert 2023.

05:33And then there's this French Celine Dion song

05:35which I learned by myself.

05:37It's called Pocuchimemanko.

05:39The most memorable moment probably is

05:44when I had my first solo in 2021.

05:49When I sang, I was like,

05:51am I good? Did I do good?

05:53And then I heard the applause and I was like,

05:56wow.

05:59That's when I knew I really wanted to pursue music and singing.

06:04Although I might look confident on stage

06:07I am very scared of going out by myself.

06:11So I will basically cling onto my mother

06:15or whoever's arm who is guiding me

06:17I will cling onto them for the rest of my life

06:19like a kangaroo baby in a pouch.

06:22If one day I have to go out by myself

06:24or have to learn to go out by myself

06:26I'd be very scared

06:27because walking is no problem

06:31but I am a very shy person

06:34so if I talk to strangers, ask them for directions

06:37I will be like, uh, uh, uh.

06:41For now, I don't really want to think about

06:44going out by myself or travelling on my own.

06:47I just want to enjoy my life as it is now

06:50because I have a supportive family

06:55that will always come and watch me perform.

06:58I feel very supported and loved.

07:02I have changed my mind lots of times about my future plans.

07:06I am scared to pursue these interests of mine

07:09because I want to become a vocal teacher.

07:13Other music teachers, they will have a printed score

07:16for the piano accompaniment for them to play

07:19to accompany their students while they're singing.

07:21But I can't read scores because they're printed.

07:25But now I'm still young so I still have time to explore.

07:29Maybe take up piano someday.

07:31As for performing, if I decide to become a performer

07:36I'm quite confident about it because I've been performing since forever.

07:42So I will just hold the mixed feelings until I decide on what I want to do.

07:48So now I'm still young, I have a long road ahead.

07:52I still have a lot of time to work on my confidence

07:58work on my stage fright, improve myself

08:01regardless of my condition, I will still pursue my passion and love for music.

Living with retinal dystrophy, Anisah | In The Spotlight

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