Stories that hit home

Stories that hit home

21 Jul 2016

I grew up with a cousin diagnosed with Edwards Syndrome at birth, and was told she had only one year to live.

When I was first approached to work on a photo story in support of Rare Diseases Day, I agreed without much hesitation.

The subject matter felt close to home.

I grew up with a cousin diagnosed with Edwards Syndrome at birth, and was told she had only one year to live.

Regine is now 14 years-old, and everyday is a miracle.

More recently, I struggled with a rare neuropathy that affected the use of my right hand. 

Being told that I might lose function of my hand was pretty devastating. But it helped realign priorities, and I eventually quit my university job to pursue documentary photography – something I’d always wanted to do.

Using my skills to raise awareness on an issue that was deeply personal to me felt only natural.

The short timeline didn’t matter. I wanted to do the story.

When I first met Caelen’s parents, we connected quickly.

Despite being strangers, we identified easily with the struggles of coping with rare diseases, especially with the persistent, and all too familiar feelings of uncertainty, frustration, and anxiety.

Although I was there to do a story on rare diseases, I didn’t want the focus to be on Caelen’s disability or diagnosis – Type 1 Spinal Muscular Atrophy (SMA). 

What struck me from my interactions with the family was the close bond they shared in spite of, and because of Caelen’s condition.

Whilst his needs were great, he was also the life of the Lam family, charming everyone with his witty nature and big heart.   

I’ve come to learn that people’s resilience against illness and disease often stems from their resistance against allowing it to become who they are.

Disease is not an identity, and should never be.

Despite Caelen’s bleak and heart-breaking prognosis – doctors told his parents that he might not live past his second birthday – it has also pushed the family to carve out a new normal amid the uncertainty.

Caelen is three now, and going strong.

I wanted the pictures to celebrate the Lam family spirit – one of love, courage, and resilience, despite the odds.

I hope that many others would be encouraged and inspired.     

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.

View the photo essay here