Helping Hiwa, family fight to keep baby alive

Helping Hiwa:

Katana Hiwa-i-te-Rangi or simply “Baby Hiwa” to her whānau, was born with a rare genetic disorder known as Dnm2 congenital myopathy. The first of its kind to hit our shores.

It is so rare that many tests have been done on her tiny, vulnerable body to help the medical profession understand the condition, for the betterment of any future cases.

Our Baby Hiwa is so sensitive to germs and viral infections that she has been hospitalised at least 30 times in her short life, two of those, we nearly lost her.

While her sweet smile and beautiful long lashes can light up a room, a dark cloud of uncertainty lingers with the question no mother should ever have to ask herself.

How long will Baby Hiwa live?

No one really knows. No one really likes to think about it. No one wants to talk about it, but it is a genuine fear and question!

As you can imagine, this has been a physically, mentally and financially crippling experience for us.

This Gofundme has been set up to HELP HIWA have the best quality of life that can be offered to her AND to support us with the ongoing hefty medical/travel/living costs.

We will be forever grateful for any amount of koha/contribution.

Arohanui,

Angelica Poharama (mama)