Baby Harper needs your help to fight this rare disease, NOMID (Neo-natal Onset Multisystem Inflammatory Disease)

Harper Lilly Elers born 6.10.2017

Harper was born with a two vessel umbilical cord and her skin was bright red which stayed around for the first week. What followed was a year of severe body rashes, fevers, Dr visits and hospital visits.

We had a few second opinions and everyone kept saying, "kids do get unexplained rashes", and to not really worry but I knew it was something more as Harper wasn't meeting her milestones.

After more and more Dr visits and hospital visits knowing my baby was in discomfort and pain, I kept showing Dr's my photos of Harper when she has her 'flair ups', a full head to toe body rash that you could see growing.

We started to get some tests, scans, x-rays and finally a MRI which required Harper to go under general anaesthetic.

A couple of days before we had our appointment to get the results of the MRI we got taken to starship hospital where two intense weeks of more tests including a Lumber puncher and a lot more Dr's and specialists, Harper was then diagnosed with NOMID, Neo-natal Onset MultiSystem Inflammatory Disease.

With only one other case of NOMID in New Zealand, Harper is our 1 in 2.3million baby! There are less than 100 cases worldwide.

A vast team of Dr's and specialists were assembled as it became obvious this was not something you see everyday. Our little family was turned upside down when hearing that this was what our new normal was going to be

We quickly learnt about NOMID and that there is no cure that there is a treatment and it's is a very expensive treatment $30,000 per year for the rest of Harper's life.

The treatment is a daily painful injection which will help to reduce inflammation hopefully.

To date we have experienced terrible body rashes pretty much constant fevers a lack of appetite and the most terrible of all is the arthritis Harper has in her joints

We now know that Harper lives with constant severe pain and there is a long list of issues that we can possibly expect with Harper.

We hope to give Harper as normal a life as possible with her sisters.

Our reality is ongoing visits to starship hospital and Hastings hospital for the rest of her life as we monitor and cope with this rare and horrible disease.

Harper has been slow at developing she has just celebrated her first birthday a few weeks back and she still can't sit unsupported for more than a minute she hasn't rolled over or crawled and looks like she won't be able to walk or if so, a very long time away as she is needing to do a lot of physio and treatments to help her joints to start moving.