Help my little warrior Princess (trisomy13) patau syndrome

Sahara was born with a chromosomal condition called Trisomy 13 or patau syndrome, its a duplication of the 13th chromosome and due to this many babies are born with many medical issues that result in death, most babys die staright away or withing the first year and life expectancy for these kids is uncertain, the majority dont live into their teens. Sahara has had many issues since birth but so far has battles all of these.

Sahara has had operation on her windpipe and spin as this was tetherd causing her pain, also her brain (cerebellum) has be pulled out of her skull, her eyes are formed the wrong way round so she has to wear glassed, she has sleep apnea and has issues with breathing.

The brain being pulled down causes her gate to be unbalanced so she struggles to stand/walk and has similar effects of vertigo, also pain numbness and pins and needles in her extremities.. the brain being pulled down now causes a condition called chairi malformation, she will need mediacl intervention in firms of drugs and surgery throughout her life as well as dealing with the Trisomy13 issues..

I am needing help and support with medical expenses and therapy for her. Due to me not being residency in NZ I am not entitled to subsidy from wins or ird for all her mediacl needs.. Sahara needs constant check ups, therapy for walking, headaches, seasures, and possible brain surgery.. due to covid and time of work when she is sick I am struggling to get all the things she needs to help her progress.