Sick babies lose weight as they no longer meet criteria for food supplements

Big smiles from beautiful twin boys. Photo / supplied

The mother of twin boys battling a rare form of cancer says her boys have been taken off their high-calorie supplements and are losing weight.

Laken and Theo Snowling were diagnosed with Juvenile Myelomonocytic Leukemia (JMML) after their birth in September.

Recent blood tests have shown the cancer was going away without chemotherapy treatment.

The twins had genetic testing done to see whether the boys have a syndrome that had caused the cancer.

The twins' mother Stephanie Archer said the little boys' high-calorie supplement had been stopped by doctors because they don't meet criteria.

Both Theo and Laken have lost weight continually since being taken off the supplement, Ms Archer said in a Facebook post on the page she has used to chronicle the twins' journey.

"So two weeks ago the boys had their high calorie supplement stopped abruptly (not my choice, apparently the boys don't meet the 'funding criteria' anymore), and I was to replace the 3x100ml feeds per day with supermarket formula.

"Since then they have continued to lose weight."

She had been breastfeeding and offered bottles and solids to the boys, but it wasn't helping, she said.

"Recovery isn't easy to watch... So hard seeing my boy uncomfortable at times. He looks at me with 'what's happening mama' eyes" Photo / supplied

Theo was 5.42kg and Laken was 5.37kg.

A dietician would assess the twins next week, Ms Archer said.

In June, Laken underwent five-and-a-half-hour surgery at Starship Hospital where surgeons patched up a large hole in his heart that was more than 2cm long.

-To follow the boys' journey, go to Theo and Lakens JMML journey on Facebook