10-Month-Old Indigo Nowakowsky-Kaiuh With Rare Disorder Is The Size of A 5-Year-Old

Ten-month-old Indigo Nowakowsky-Kaiuh suffers from a rare disorder known as Beckwith-Wiedemann syndrome that affects only one in 15,000 children. The condition has caused Indigo, born only 10 months ago, to grow to 25 kg, about the size of a 5-year-old.

Beckwith-Wiedemann syndrome could be genetic or “random.” Indigo’s case is typical, involving an “overgrowth disorder” characterized by a very rapid growth rate in terms of weight and body dimensions. Patients have enlarged internal organs, very large tongues, and an increased risk of childhood cancer.

Indigo, who lives with her family in Feilding, in the Manawatu District of the North Island, 20 kilometers north of Palmerston North, in New Zealand, suffers several physical challenges due to the rare condition, including breathing problems and restriction of movement.

Abnormally fast growth, breathing difficulties, restricted movement, inability to learn how to walk and a mother, Tiffany Nowakowsky-Kaiuha, suffering from the effects of a previous back injury, summarize only partly the challenges faced by Indigo’s family.

Ten-month-old Indigo was diagnosed of the condition at four months after her weight began increasing so fast that she was wearing clothes for 1-year-old children when she was three months old, according to Stuff.co.nz.

“She came home and she was fine but kept putting weight on really fast; you could tell something was wrong.

“They did some blood tests and found she has Beckwith-Wiedemann syndrome. We’re waiting for further tests to find out if it was genetic or random.”

She was born weighing 4.8 kg, with several medical issues, including fluid retention, navel hernia and enlarged internal organs. Now Indigo is growing so fast that her clothes and car seat have to be replaced every two weeks. She is already on her fourth car seat, according to Tiffany.

At home Indigo uses a specially made high chair and pram. At 8 months old she was wearing clothing for 7-year-old children. At 10 months, she is bigger than her 6-year-old brother. She wears adult nappies and clothes for 6-8 year-old children.

Tiffany says the family would be happy to receive clothing donations.

Indigo’s fast growth places a lot of strain on her internal organs. The excessively fast growth rate outpaces her muscular development, meaning that she cannot support her own body weight. She is unable to lie down flat safely because the compression on her lungs due to her own body weight makes it difficult for her to breathe. She sleeps with special support to prevent asphyxiation.

“People just don’t get how big she is and how hard it is. People just assume ‘oh yeah she’s a big baby, I’ve had a big baby,’ but your baby hasn’t put on weight this fast and has stopped growing. They just don’t get it, the normal everyday thing that a parent does is much harder because she’s so big.”

Indigo’s special needs place a heavy financial burden on Tiffany, a mother of three. The financial burden is increased by the costs of Indigo’s medical care: the cost of regular trips from Feilding to Palmerston North hospital for regular blood tests and scans for tumors and cancers.

People with the syndrome have a heightened risk of tumors and cancers.

The family also needs to replace its tiny Mitsubishi Legnum with a bigger car, as Indigo would soon be unable to safely use the car in her frequent trips to the hospital.

Indigo has two siblings, Shade, 6, and Devon, 4. Tiffany says that the extra care and attention that Indigo demands means that the two other children are receiving less attention than they need.

“They want to play with her, but they didn’t realize they can’t play rough with her because she’s still a baby even though she looks big.”

But doctors have expressed hope that Indigo’s growth could begin to “level out” when she is about 8-years-old.

The family is being assisted with an online fundraising campaign. The webpage opened to raise funds for Indigo Nowakowsky-Kaiuh on October 3, 2014 has collected over $2,200, still a long way from the target of $15,000.

[Images: Facebook]