Brave tot has rare disorder

Tafea Iasona with her daughter Debbie who has the rare Moebius Syndrome. Photo / Stephen Parker

Tafea Iasona dreams of living in a Rotorua where her daughter is not stared at or judged.

Instead, she hopes wee Debbie is just seen as a girl with a bit of a quirky smile.

The 14-month-old was diagnosed with the rare congenital neurological disorder Moebius Syndrome which has left her unable to smile, blink or move her eyes side to side.

She's still on pureed food as she can't chew and has facial paralysis. She also has a clubbed foot which meant she needed a full leg cast from birth until she was 9-months-old and will have to wear special boots at night until she is at least 4-years-old.

The condition is so rare that many doctors didn't pick up what was wrong - initially putting it down to a traumatic birth until a plastic surgeon suggested it was Moebius Syndrome when she was about 10-months-old.

"I had a bit of a cry because it's not going to get better. I always had in my mind she was going to get better," Ms Iasona said.

"It was like a weight was lifted and one added at the same time."

While many medical professionals hadn't heard of the condition, it wasn't new to Ms Iasona who had stumbled upon it while researching Debbie's symptoms on the internet.

"They say never to google but I had googled it when she was about two months and saw moebius but then switched it off."

She was thankful that the condition was mild in Debbie. While the facial paralysis makes speaking difficult the tot is picking up words and is the boss of her older brothers who affectionately refer to her as "diva Debbie".

Ms Iasona wants to share Debbie's story to raise awareness of the condition. She only knows of eight other kids in New Zealand with it.

While the past year has been a whirlwind of medical appointments - from paediatricians to speech therapists and fittings for her special boots - it hasn't put Ms Iasona off hospitals. She hopes to train as a nurse if Debbie is able to attend a pre-school.