Caelen's story

"We count our blessings, and see each day we have with him as a gift,” says Caelen's parents, Lowell and Kam Choy.

When Caelen was 10 months old, doctors said that he might not live past his second birthday because of a rare disease: an incurable form of Spinal Muscular Atrophy (SMA), which is a genetic condition that causes progressive muscle degeneration and weakness, eventually leading to death.

Caelen turns three soon. He is precocious and often charms everyone with his generous heart and witty humour. In his world, nobody should be left out.

Despite his devastating and heart-breaking prognosis, he is often the life of the family and brings much joy and laughter.

It has helped the family carve out a new normal amid the uncertainty.

Commissioned by Our Better World

When Caelen was diagnosed with Spinal Muscular Atrophy (SMA) in January 2014, his mother, Lowell, quit her job to care for him. SMA Type I is a degenerative disease that affects a person's gross motor skills, as well as one's info
As part of their daily morning routine, Lowell sits with Caelen to guide him through a session of independent sitting to strengthen his core muscles. Having poor balance and weak trunk control, he has difficulty sitting up st info
Much of family time is spent at home as Caelen tends to fall sick easily when he goes out. Being the sole breadwinner, his father, K.C., runs his own marketing business so that he has the flexibility to spend more time with h info
One of Lowell's wishes is for Caelen to find a homeschool teacher so that he will be able to receive formal education like his peers. In the meantime, she reads to him daily and teaches him what she can through e-learning boo info
Caelen loves to paint. He spends many afternoons doodling with a paint brush info
Caelen's sister, Cayla, attends the kindergarten under their block. Caelen is unable to join his sister as the environment is unsuitable for special needs children info
Mother and son spend most of their time together as Lowell provides round-the-clock care for Caelen. The multi-positioning chair helps provide head and trunk support for Caelen, and allows him to learn while sitting upright info
Caelen is a quick learner and very articulate. He often surprises his Mum with his vocabulary, amassed from reading or watching television. When Lowell pointed at the cupcake and asked him what it was, he replied: 'The frosti info
The family has had to invest in expensive home-care equipment for Caelen's medical needs. He requires interventions such as tube-feeding and respiratory support to maintain his health info
Lowell does stretching exercises with Caelen before his afternoon nap info
They share a very close bond info
Concerned that Cayla would feel left out because of the round-the-clock care that Caelen requires, K.C. is intentional about spending time with her info
Still, Cayla sometimes suffers from jealous bouts, and fights for her mum's attention info
But Cayla also helps to look out for her brother - like propping his head up when he's having trouble doing so - in the brief moments when mum is attending to something else info
Although the doctor advised that Caelen should only be tube-fed, Lowell lets him enjoy tiny amounts of chocolate and cereal that he loves, a treat for which she had to sign a medical waiver info
Caelen adores his elder sister and looks up to her. And despite the occasional sibling fight, the two are close info
Family time includes playing with torches in the dark. When he sleeps, Caelen needs to wear a respiratory mask to ensure that he breathes properly through the night info
When it's time for bed, K.C. tucks Cayla in while Lowell shares the master bedroom with Caelen info
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