How Juliah Kasiman Honours Her Son’s Memory by Uplifting Special Needs Families

In memory of her son Izhar, Juliah channeled her grief into purpose to raise awareness for rare disorders in Singapore.

Juliah Kasiman is the Head of Programmes & Services at the Rare Disorders Society (Singapore) (RDSS). For the past few weeks, the 44-year-old mum has had her hands full with planning the upcoming Purple Parade on 25 October 2025, Singapore’s largest annual event which supports inclusion and celebrates the abilities of Persons with Disabilities (PwDs).

Juliah joined RDSS as a parent volunteer after her son, Izhar, passed away from Right Isomerism in 2022. The uncommon condition is a type of atrial heterotaxy, where a person’s internal organs are either wrongly placed or formed abnormally.

2025 will be her third year participating in The Purple Parade. Through the event, she hopes to shine a spotlight on the rare disease community and provide a safe space for the families within it.

Juliah’s Journey as Izhar’s Caretaker

Photos of Juliah and Izhar from a scrapbook gifted by Juliah’s friend.

When Juliah was pregnant with Izhar 16 years ago, a 20-week fetal scan revealed the baby was likely to have congenital defects. However, medical professionals could only confirm and officially diagnose Izhar’s condition post-birth.

“At birth, Izhar’s heart valves were either leaky or missing, and his internal organs were placed in a mirror-image arrangement."

He was immediately whisked to the Intensive Care Unit (ICU) and underwent open-heart surgery at just one month old. At six months, he suffered a heart attack and the organ stopped beating for 30 minutes. The event resulted in severe developmental consequences; Izhar was left visually impaired and grew up to be a non-verbal child.

Despite his condition, Izhar was a cheerful and bright child.

In total, Izhar spent the first fifteen months of his life in the hospital, eight of which were in the ICU. During the long hours spent in the hospital, Juliah met other parents who were going through a similar predicament. They formed a system of mutual support and it made her realise how important it was to have a community when raising a differently-abled child.

One of these connections was Rae Mok, who went on to found Project GIVE, an initiative which offers social support to families with children with medically complex conditions. Later on, Izhar became one of the project’s beneficiaries and Juliah joined as a volunteer before eventually becoming co-lead.

Juliah holding onto a pillow that was made from Izhar’s old school uniforms and gifted to her.

In the years that followed, the couple welcomed their second and third children, and Juliah stayed home to manage Izhar’s needs. Meanwhile, her husband worked hard to support the family and pay off the outstanding $100,000 hospital bill incurred.

“As the main caregiver, having to think about Izhar’s needs 24/7 did take its toll. The mentality of being stuck in a certain space was initially hard to overcome. But the actual act of taking care of him wasn't that difficult.

Juliah was the main caretaker for Izhar, but her family helped share the responsibility of caring for him.

In part, it was because I had a very strong support system. On the weekends, my in-laws would help out. My husband and mother-in-law were very hands-on with caring for Izhar. My father, who was a Grab driver, would also drive Izhar to school when he could. I’m very thankful for my family because they all banded together to help him.”

Channelling Her Grief Into Contribution

Past family photos of the family together with Izhar. (Photo credit: Juliah)

At 10 years old, Izhar was diagnosed with heart failure. He was 13 years old when he passed on 2 September 2022.

“I make it a point to post on Instagram on the day that he passed every year. But in the day-to-day, our family doesn’t shy away from talking about him. We remind our children about Izhar and share what we remember about him. We still visit his grave and pray for him.

My favourite memories of him are just snuggling and falling asleep together. He was always a smiley and playful child, always doing the weirdest and funniest things. He would scoot around on his back, use his feet to play with doors, and pinch others jokingly.”

Half a year after Izhar’s passing, RDSS reached out and asked if she wanted to join them. Juliah agreed with the intention of giving back to the community and helping other families with children with rare diseases.

It was not a big leap for her to do so as she had already been an active volunteer with Project GIVE for the past 12 years. Aside from The Purple Parade, she also organises events such as walkathons and Mother’s and Father’s Day celebrations.

Raising Awareness for the Rare Disease Community 

Juliah also attended past Purple Parade events with RDSS. (Photo credit: Juliah)

Through her work at RDSS, Juliah wants to ensure no family feels forgotten during their most challenging moments. She also hopes to raise awareness for and support other caretakers who have gone through similar experiences.

“Not all diagnoses present themselves through visible symptoms. In general, I think we should be more empathetic and keep judgment to ourselves. Everyone has their own battles and we don't know what's happening in the background.”

The RDSS team preparing for The Purple Parade performance segment online.

For other parents who have differently-abled children or kids diagnosed with rare diseases, she encourages them to seek help and support from the community.

“There isn’t a manual on how to raise kids, especially with special needs kids. And somehow, they are placed in a position where they need to be strong. It can take some time for the parents to deal with grief at the moment of their child’s diagnosis and accept the situation before they reach out.

The journey may feel like you’re running a marathon. But know that you don’t have to do it alone.”

The Purple Parade is Singapore's largest annual event celebrating the abilities and promoting the inclusion of persons with disabilities (PWDs). As we celebrate SG60, let’s continue to contribute and show care for our community. Visit volunteer.gov.sg to find more ways to give back today.