When Dora J. first became a mom, she knew she had a lot on her plate.
Going alone during pregnancy and welcoming a little girl without the support of her family, the young mother was ready for difficult times. But just 15 hours after giving birth, she learned her daughter had a rare condition — a diagnosis of septo-optic dysplasia, which causes the optic nerve, pituitary gland and certain parts of the brain to underdevelop, according to the Cleveland Clinic.
“Sadaya was diagnosed 15 hours after I gave birth,” J tells PEOPLE. “As I was rocking her in the nursery, I noticed her eyes were rolling around. I could only see a white area, which prompted me to ask the nurses, ‘can my daughter see me?'”
At first they thought she was a nervous new mom until she showed them what she meant. Within moments, “a team of about 13 different experts rushed in.”
An MRI and blood tests are due in the next 24 hours to determine if Sadaya was born completely blind.
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“Immediately it was very difficult, especially because it was not diagnosed during pregnancy. Receiving the news was very difficult for me. It took a lot of emotional stress.”
She continues: “It makes me sad every time I say it, but I was a single mother throughout my pregnancy and after I gave birth. I didn’t have company to understand the pain I felt when I found out about my daughter’s diagnosis.”
“And my family didn’t understand me. There was so much I had to worry about, finding services for my daughter.”
Doctors referred Sadaya’s mom to various resources, including the Golden Gate Regional Center, to help provide services for Sadaya while also supporting her mother. “Connecting with them was really helpful in the sense that I was dealing with it on my own, without a typical support system to vent my emotions to.”
Mother and daughter got help and got into a routine, and mom always emphasized positivity and spread joy. From the very beginning, Sadaya decided to do it through music.
“She always gravitated towards anything musical, obviously because she had no visual perception. So all toys that had sounds, household objects, she always responded with interest. I’d say around two years old is when I gave her gave her first baby piano with keyboard from Target, and she absolutely loved it.”
“Eventually, she learned to play her first song on the piano when she was about four and a half. And she was always a little singer, but she really fell in love with me when she was five or six.”
Sadaya is now getting vocal training thanks to vocal coach Sheryl Porter, who found her on Instagram last year and asked her mom if she could work with her. The 11-year-old dreams of one day collaborating with her current favorites —
“Right now, I’d pick Adele, Rihanna and Andra Day,” Sadaya tells PEOPLE, sharing her favorites “Easy On Me,” “Lift Me Up” and “Rise Up.”
“Just the music just gave my daughter such a confidence boost and she was effortlessly practicing every day and getting better. With her vocals and stuff, she was doing lessons and we flew over there in November to work with Cheryl. And we’ll be back in April.”
It’s the moment of togetherness Dora J. hoped for when she decided to start sharing Sadaya’s story online, hoping to connect with other families affected by disabilities. “It’s very important for me to express how I feel. I cried every day – for two and a half, three years every day – frustrated and unable to express how it was.”
“I had to find a community that understood me. So I initially started her Instagram account when she was 5, so I could share the journey and connect with parents online who had children with any diagnosis,” she explains. – And that’s where it all started.
Dora J. believes that what attracts people to her and Sadaya is their acceptance of the community by supporting others and always being honest but positive.
“We keep it raw, we talk about the emotions of everything we’re going through. So many people love that about both of us in general. They love seeing Sadaya not let her diagnosis stop her. They’re excited to see me as a single mom, inspiring her, lifting her up. It was it’s a great experience that also drives us.”
Dora J. and Sadaya are dedicated to focusing on positivity, which isn’t always easy as mom mentions “going through so much, I could literally write a book.”
“There are so many things I’ve been through with my daughter that I’m not ready to bring up because it’s very painful. Our life has been in danger in the past. It’s always been very important to me to raise my daughter to be uplifted and empowered, even as we lived in a low-income neighborhood with shootings outside our house every day. I have to let her know that this is not what we were put on this Earth for, that we are bigger than this.”
As a mother, it can be “reassuring” for a mother to see others support her parenting, especially when she “feels like I’m failing.”
“We’re still in San Francisco, but it’s a very traumatic city for us. Ultimately, our goal is just to wait for our moment, move and start life over. Live the way we should be, the way she really deserves.”
When it comes to their online presence, it’s been a fun mother-daughter bonding activity, but it doesn’t take away from the importance of who they are.
“Our intention is more to let others know that no matter what differences she or I may have, we’re just regular people trying to make it in life. And we don’t let anything stop us, no matter what.”
Dora J. also takes comfort in seeing conversations about inclusivity spring from Sadaya’s videos, which sometimes show the various tools she uses to get through her daily life.
“It’s so important to be more inclusive where we can,” she says. “It is very encouraging and makes us very happy that everyone wants to know about Sadaya and the details of her life. They are excited to learn about her diagnosis and what she has to go through on a daily basis. We are also excited that you are being teachers and spreading positivity while showing what is possible when we are inclusive.”
As for Sadaya, she’s “super proud” to be raising awareness for the blind and visually impaired community, while spreading her love of music along the way.
“It’s a pleasure and I love it,” the 11-year-old tells PEOPLE. “It makes me feel so happy and it puts a smile on my face. Who wouldn’t want to educate people about blindness if they don’t know about it? I’m extremely proud to be blind and I want the world to know that.”
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Source: HIS Education