Siblings swim to raise funds for kids with kidney failure

This National Day, we celebrate with 16 stories of people who overcame adversity to give back to society. Read their stories and watch the videos at tnp.sg/ndp2016

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She is only seven and she undergoes dialysis every day.

He is 14 and already has two shunts implanted to relieve pressure from his brain and spine.

Both Diksha Anand and older brother Satya suffer from focal segmental glomerulosclerosis (FSGS), a disease that scars and hardens blood vessels within the kidneys.

As a result, large amounts of protein from the blood leak into the urine rather than remain in the bloodstream, causing swelling.

Professor Yap Hui Kim, who heads the Division of Paediatric Nephrology at the National University Hospital (NUH), said FSGS is a leading cause of kidney failure and one of the more common causes of end-stage renal failure in Singapore children.

Despite their condition, Diksha and Satya remain active.

Diksha plays badminton and basketball and Satya plays football with friends in the neighbourhood. They also play musical instruments.

On July 9, the brother-sister duo took to the waters at HIGH TEN!, a swimathon held at the Tanglin Club to raise money for needy children with kidney failure.

The event, organised by the Tanglin Club and the Shaw-NKF-NUH Children's Kidney Centre (CKC), raised $145,000 for CKC and its programmes such as the annual Children's Kidney Camp and Project Dreamcatchers.

The 10-hour swimathon reflected the time taken for dialysis to be completed. Diksha and Satya swam a relay with five other patients from NUH. Several members of Tanglin Club also swam in the relay.

The siblings trained every weekend for the event.

But because of their condition, their family and doctors had to stand by during the swim to ensure that Diksha's catheter site was well protected and that Satya's shunts were not compromised during the event.

DIAGNOSED YOUNG

Their condition was diagnosed at a very young age - when Satya was four and Diksha was two.

Their mother, Mrs Pushpa Anand, 48, said: "Satya had difficulty walking at the age of two, but the doctors could not put their finger on the issue until he turned four.

"That was when tests showed he had FSGS."

Treatments for FSGS include steroids and other immunosuppressive drugs, such as cyclosporine, but these caused Satya to develop intracranial hypertension, where the pressure within the skull builds up and gets too high.

Mrs Anand said: "He was in Primary 5 when he had a shunt put in from his brain to his peritoneal cavity (abdomen) to drain the water and relieve the pressure."

But he still got the occasional headaches and they were so painful he could not eat or function.

His second shunt was installed when he was 12 to relieve pressure from his spine.

"I couldn't go for the Kidney Camp that year but Diksha went," said Satya.

The Children's Kidney Camp is a sleepover held yearly.

Mooted by Prof Yap, it enables children with kidney conditions to take responsibility for their own health care, including medications and dialysis, and to promote activities that will improve self-esteem and leadership qualities.

Mrs Anand said: "With the experience we had with Satya, we were able to cope better with Diksha."

Unfortunately, Diksha's condition deteriorated. Her creatinine level went up and there was fluid retention.

Because of that, she had to start haemodialysis in December last year and peritoneal dialysis in February this year.

Still, it did not stop the siblings from taking part in the 10-hour swimathon at Tanglin Club.

Club president Robert Wiener said: "We are a privileged society that realised that we can organise and use our facilities to engage and adopt causes and I am very humbled that the swimming section has taken this huge step towards this."

Mrs Anand said: "While we can afford the treatments and take them on holidays, there are children who are not so fortunate.

"I want my kids to learn that even though they are sick, they are still fortunate."

"While we can afford the treatments and take them on holidays, there are children who are not so fortunate. I want my kids to learn that even though they are sick, they are still fortunate" — Satya’s mother, Mrs Pushpa Anand

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TNP SPIRIT OF 16 GIVINGBACK

The beneficiary is Project Dreamcatchers