Submitted by admin on Tue, 09/06/2016 - 11:01

Health

Diversity and Inclusion

Children and Youth

A boy's generous heart and humorous wit helps his family to live as normal a life as possible with an incurable rare disease.
'The frosting is green!'
'The frosting is green!'

"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 told his family 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.  

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 ability to feed and breathe. Most patients do not live beyond two years due to respiratory insufficiency
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 straight on his own
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 his children
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 books
 
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Caelen loves to paint. He spends many afternoons doodling with a paint brush
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
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
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 frosting is green!'
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
Lowell does stretching exercises with Caelen before his afternoon nap
They share a very close bond
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
Still, Cayla sometimes suffers from jealous bouts, and fights for her mum's attention
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
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
Caelen adores his elder sister and looks up to her. And despite the occasional sibling fight, the two are close
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
When it's time for bed, K.C. tucks Cayla in while Lowell shares the master bedroom with Caelen

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.

(Click on the pictures to find out what the green frosting is all about).

Take Action

Caelen and his family are part of the community connected to Rare Disorders Society Singapore, which offers support to children and families with rare diseases and seeks to create awareness about such diseases. 

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Rare Diseases Society (Singapore)
Established in 2011, the Rare Diseases Society (Singapore) hopes to create awareness about various life threatening rare diseases. This non-profit organisation is the only of its kind in Singapore - creating a support-group for all patients with diagnosed and non-diagnosed rare diseases.
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