Living with retinal dystrophy, Anisah | In The Spotlight
“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
Watch more: https://www.asiaone.com/video
Category
🛠️
LifestyleTranscript
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.