Baby Tais life changing diagnosis

My son Tai was born a beautiful happy baby , then started to lose weight and had some signs of health issues. At almost 2 weeks old he was diagnosed with cystic fibrosis, a rare terminal genetic disorder.

Cystic fibrosis is a disease which affects lots of major organs , mostly his lungs and pancreas for now. Tais body produces a mucus that is much thicker than normal leading to the deterioration of his lungs.

Tai currently has to take a pancreatic enzyme before every single bottle and will have to do this for the rest of his life so his body can process food and nutrients to live. For now tai does physio twice a day to try and keep his lungs as healthy as possible.

Cystic fibrosis is so rare and funding for treatment or medication in New Zealand is super limited.

Medical equipment he needs (CF vest) isn’t funded or subsidized in NZ. These cost around 10-12 thousand alone. There are miracle drugs that can help tai have a longer and better quality of life but are not funded till the age of 6 in Nz. The cost of this medicine is 330 thousand per year before gst until then.I want my son to live the longest and healthiest life possible but access to treatments are so limited.

Cystic fibrosis is a terminal disorder and we want tai to live as long as he possibly can! We need help to give my baby the best possible chance at a healthy life!