Memories might fade with the passage of time, but photographs have the magical ability of capturing the beauty of fleeting moments for eternity.
For HCA patients and their loved ones, the significance of family portraits is amplified because death is never far from the mind. When late HCA Star PALS patient Kaelyn Chan was first diagnosed with Spinal Muscular Atrophy (SMA) Type 1, her parents, Kelvin Chan and Tay Shuhui, wanted to create as many happy memories with her as they could.
Despite the discomfort Kaelyn often experienced, she had a ready smile for everyone she met.
“It was the first time we came across the words ‘Spinal Muscular Atrophy Type 1’,” Shuhui says. “We did our research and googled to understand more about it, in hopes of finding a cure.”
The couple’s hopes were futile – there was no known cure for SMA. Though deeply devastated, Kelvin and Shuhui were determined to make the most out of the situation. “It was the third week after Kaelyn had tested positive for SMA at four months old that we told ourselves to make the most of every day, instead of just grieving, because Kaelyn would have been affected by our negative emotions,” Shuhui shares.
Every child is unique, yet united in their propensity for joy. Regardless of their physical and mental functions, they are often curious about the diverse sights and sounds of the world around them.
Kaelyn was no different – she was unable to speak but she would express her preferences through sounds, facial expressions and arm movements. Her happiness brought much comfort to Kelvin and Shuhui and motivated them to spend as much quality time with her as possible.
“She was bed-bound and had a weak immune system so it wasn’t easy to move her around,” Shuhui says. “We tried to avoid crowded indoor places to minimise the risk of her catching any viruses or bacteria – the common cold or cough could be fatal.”
The trio enjoyed outings to places of interest, like any other family would.
“Outdoor options were preferable but we also did bring her to places like the S.E.A. Aquarium, River Safari and Singapore Zoo during off-peak seasons. She enjoyed these outings as much as any other child would.”
Despite the discomfort of repeated hospital stays and regular suctioning to remove the build-up of secretions, Kaelyn remained cheerful. “We will always remember her smiles; she was such a happy baby,” Shuhui shares.
It was the element of remembrance that inspired Shuhui to write in to volunteer group Portrait from the Heart, requesting for a family portrait to be taken. “When Kaelyn was diagnosed, I wanted very much to have a proper family portrait with her, knowing that she might only have two years with us, based on the prognosis,” Shuhui says. “However, it was tough as she relied on several medical equipment for basic functions and the studio photographer might not understand our situation.”
The experience left a deep impression on Kelvin and Shuhui. “Lawrence [founder of Portrait from the Heart] and his team came to our home to set up their photography equipment – there was even a makeup artist who helped me with a makeover,” Shuhui shares. “They spent the whole afternoon with us and were so accommodating to our needs. It was heartwarming and lovely and that was the only proper family portrait we have.”
Family portrait taken by the Portrait from the Heart volunteers.
Moved by the love and warmth they had received from strangers, the couple decided to return the kindness by volunteering with Portrait from the Heart. “About three months after Kaelyn’s passing in 2015, we told Lawrence that we would like to help, especially since Kelvin has some interest in photography,” Shuhui shares. “I took up a three-month makeup course as well.”
The couple has captured numerous family portraits ever since, a meaningful journey that has enabled them to reach out to other families facing similar struggles. “There was a baby who passed on in the midst of the photoshoot, which we only knew about after,” Shuhui shares. “We were also inspired by [late HCA Star PALS patient] Baby Elijah’s courage and endurance to make it back to her hometown in the Philippines, despite being unable to feed.”
Nothing can ever sufficiently prepare a parent for the death of their child, but the gentle and supportive presence of a friend may soothe the pain a little. “I think different people handle situations differently,” Shuhui says. “When we are around, we just try to listen, empathise with their difficulties and also to share any joy they have encountered in their unique journey.”
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