Brothers With Hereditary Spastic Paraplegia

12.24.2016
a woman smiling
Curated by
Kristen Sachs
Content via In The News
Source: 
In The News
Curated by
Kristen Sachs

Brothers Kenneth and Eugene love being active. They were both members of the Outdoor Adventure Club (ODAC) in Catholic Junior College where they ran 5 km on a race track every morning. The brothers even joined the Singapore Armed Forces (SAF) in active roles: Kenneth entered the Naval Diving Unit, eventually becoming a diving instructor, and Eugene was drafted to the Singapore Armed Forces Commandos Formation.

In 2014, during their training for their yearly Individual Physical Proficiency Test (IPPT), a mandatory fitness test for SAF personnel, the brothers began to notice something wasn’t right with their physical performance.

“I used to be an avid cyclist and adventure racer. But when the time came for me to take my IPPT, I realised I had some problems running,” shares Kenneth. Eugene says, “I failed my IPPT, which has never happened before, because I got gold all my life. When I failed, I was shocked.”

two brothers with walking devices on a path

Within months of one another, Kenneth and Eugene were diagnosed with Hereditary Spastic Paraplegia (HSP), a genetic neurological condition that affects mobility in the lower limbs. “In laymen terms, what is means is when the brain says something, the farther down away from the brain it is, the less signal is received,” explains Kenneth.

The diagnosis was difficult for the brothers and their parents to deal with initially. No one else in their family had been diagnosed with the disease even though it is genetic. The condition had been latent in their family until the brothers’ diagnoses.

After things began to settle down, Kenneth and Eugene found themselves surrounded by support from their friends and family. Kenneth said his and Eugene’s friends from ODAC and the SAF often came to visit them, just to hang out and walk with them. And Eugene says his girlfriend Tan has been a pillar of support for him. 

“I don’t think the disease changes the person he is fundamentally, so to me, it’s not much of a difference,” says Tan.

The brothers have each pursued different interests post diagnosis. Kenneth has rediscovered his love for art, while Eugene is applying for a Masters in Physiotherapy. And together they have begun physical training of a different kind: “Doctors that we consulted recommended physiotherapy to slow down the chances of any further degradation of our legs,” explains Kenneth. So the brothers started a Facebook page titled Mountain Tortoise where they document their training progress.

Kenneth says that throughout this journey he and Eugene have developed an even deeper bond. “I understand him a lot better, and he understands me a lot better.” Clearly, this is a path the brothers are taking together, and supporting one another along the way.

See more Stories About: 
RelationshipsFamily