Ill, but two kids training hard to raise funds for needy children

Diksha Anand (right), 7, and her brother, Satya (left), 14, were both diagnosed with focal segmental glomerulosclerosis at a very young age. Despite the chronic disease, they have an active lifestyle.
PHOTO: The New Paper

She goes for dialysis three times a week.

He has two shunts - one from his brain and the other from his spine - that lead to his stomach.

Yet Diksha Anand, seven, and her brother Satya, 14, are training hard to swim a relay with five other patients from the National University Hospital (NUH) in a 10-hour swimathon to raise money for needy children with kidney failure.

Called HIGH TEN!, the event, organised by the Tanglin Club and the Shaw-NKF-NUH Children's Kidney Centre (CKC), aims to raise $100,000 for CKC and its programmes such as the annual Children's Kidney Camp and Project Dreamcatchers. (See report at right.)

Ten hours was picked because it takes that long for dialysis to be completed.

Both Anand siblings suffer from focal segmental glomerulosclerosis (FSGS). This disease scars and hardens blood vessels within the kidneys.

As a result, large amounts of protein from the blood leak into the urine rather than remaining in the bloodstream, and cause swelling in the patient, said Professor Yap Hui Kim, who heads the Division of Paediatric Nephrology at the National University Hospital (NUH).

Prof Yap said FSGS is a leading cause of kidney failure and one of the more common causes of end-stage renal failure in Singapore children.

The siblings' condition was diagnosed at a young age - when Satya was four and when Diksha was two.

Their mother, Madam 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 they caused Satya to develop intracranial hypertension, where the pressure within the skull builds up and gets too high.

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

Satya said: "But I still get the occasional headaches and they are so painful I cannot eat or function."

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

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.

Despite their condition, Diksha and Satya remain active. Diksha does wushu and Satya plays football with friends in the neighbourhood. They also play musical instruments.

The siblings were adamant about taking part in the 10-hour swimathon at Tanglin Club on July 9 and are training every weekend.

Their parents, who are both in the legal industry, will be on standby to ensure that Diksha's catheter site is well protected and that Satya's shunts are not compromised during the event.

"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," Mrs Anand said.

About High Ten!

A 10-hour swimathon, organised by Tanglin Club and National University Hospital (NUH).

When: Saturday, July 9

Where: Tanglin Club Swimming Pool

Goal: $100,000 for NUH programmes such as Children's Kidney Camp, and Project Dreamcatchers.

How to donate: Donations should be made out to the National University of Singapore, with Tanglin Club/Children's Kidney Centre written on the back of the cheque.

The Children's Kidney Camp, a sleepover held yearly, was mooted by Prof Yap Hui Kim, the head of the Division of Paediatric Nephrology at NUH.

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.

Project Dreamcatchers is a teens chronic illness peer support group, made up of a group of adolescents living with various forms of childhood chronic illnesses.

Seven patients with chronic diseases will be taking part in the 10-hour swimathon.

This article was first published on July 1, 2016. Get The New Paper for more stories.