Frankie Watson

Following Frankie's lung biopsy, Nadia & Ryan finally have Frankie's Diagnosis.

He has, Neuroendocrine Cell Hyperplasia of Infancy!!

Known as NEHI.

It is a very Rare Lung Disorder and is classified within the group of children's instistitial lung diseases (chILD).

There is currently limited information on the long term prognosis as NEHI has only been recently recognised (labelled in 2005).

The symptoms usually decrease over time & are not progressive in nature (which is great). The biggest challenge is keeping him as virus free as possible as obviously any illness can be detrimental to Frankie's health. It is said that his lungs will most likely never be 100% so for how long oxygen is needed is still unsure.

So the aim is still to get to America, now in 2016, for many reason's - one being that Frankie is the only (chILD) kid in NZ.

Frankie's just started crawling & its a nightmare with his tubing. We are still looking into a service dog (many hurdles to overcome there). We do remain hopeful for how this would help him in his development when he is only with a short reign - A knotted one at that!

You can see Alida in the clip below, she too has NEHI

and is our inspiration!

Any questions that you may have, we will happily answer :)