‘Mummy, why am I not like you?’: Catalaya’s journey through blindness and hope

When Vanessa first heard the words ‘Leber congenital amaurosis’, she had no idea how deeply they would reshape her world.

The rare genetic condition, which affects the retina and causes profound vision loss in early childhood, would change the life of her daughter, Catalaya but not in the ways many might expect.

Eight-year-old Catalaya is bubbly, joyful and intelligent. So much so, her mother says, that “sometimes, you forget she can’t see”.

Yet, the reality of her blindness sometimes breaks through the playfulness.

“She gets frustrated sometimes and says, ‘Mummy, why am I not like you? Why can’t I see?’ It breaks my heart,” Vanessa says.

“She doesn’t know what I look like, what her siblings look like, or even what she herself looks like. Her brothers and sisters can see themselves growing up through photos but she can’t understand what a photo means.”

Catalaya, like others born with this condition, has retinas that don’t develop properly. As a result, the messages from her eyes to her brain simply don’t pass through. But, despite this, she’s found ways to navigate life with remarkable strength and ingenuity.

“At Christmas mass, she read out a whole speech. She had it in braille but told me she didn’t need it. She’d memorised it. I was so proud of her,” Vanessa says.

You wonder how she’ll do things. But then you realise she can do everything. It’s us who create the limitations

She recalls the early fears, when doctors confirmed the diagnosis.

“You wonder how she’ll do things. But then you realise she can do everything. It’s us who create the limitations.”

Now, Catalaya is thriving. She came first in her class this year, uses a special device to read stories and can even tell which book she’s holding just by the feel of the cover.

“She’s very intelligent. She also wants to be a braille teacher one day,” Vanessa says. “She’s already said she’ll teach her little sister.”

Vanessa has four children, two of whom – Catalaya and younger sister, Ivana – are visually impaired. The bond between them, she says, is deep.

“When I was pregnant with Ivana, Catalaya asked me if she would be like her. It didn’t even cross my mind that it could happen again. But, now, she sees it as her role to guide Ivana. She says that when Ivana is older, she’ll teach her everything she knows.”

Through the challenges, Vanessa says she has found strength in unexpected places, including in the support of former president Marie-Louise Coleiro Preca, founder and president of the Malta Trust Foundation.

The NGO develops initiatives that support children, young people and communities that are facing particular challenges and who are at risk of poverty or social exclusion.

“I’ve never met a woman like her. She replies quickly, she helps without question. She’s like an extra family member. When I need help, I know I can turn to her.”

From noon to midnight on Saturday (May 24), The Malta Trust Foundation will be holding a televised marathon. Donations can also be made via the BOV mobile app on 7952 0040 or a cheque can be sent to The Malta Trust Foundation.