Walter was born in March 2017 and for the first few weeks we were in new-born bliss and all seemed well. As the weeks went on though, things didn’t seem quite right...
We were living in Auckland at the time and in a routine GP visit for yet another chest infection we mentioned that Walt’s left eye shook.
This seemingly insignificant comment took us to the Neurology Dept at Starship via Ophthalmology. After an MRI and a five-week hospital stay with aspiration pneumonia, it became clear that it was a neurological condition causing the series of challenges Walt was facing.
We honestly thought at that point that Walt would need a patch to strengthen the shaky eye, never did we ever imagine, nor prepare to be told that things were not OK and would likely never be.
When it was clear that Walt was not going to get better and after many hospital stays, tests, and to be honest a real lack of community care in Auckland, we decided to move home. Waikato was home for both Greg and I and we needed to be nearer family support, as Walt deteriorated.
At the absolute hardest time any parent can face, Rainbow Place was
there for us.
Rainbow Place was literally there when we arrived. Right from that first initial meeting, we instantly felt so much more supported.
The next five months were harrowing as we tried to keep Walt comfortable as his symptoms increased. The Rainbow Place team helped us advocate for Walt and keep his comfort and happiness at the forefront. They provided us wraparound care and a place to go when things got too tough.
Despite the pain, Walt was a cheeky little boy who loved to laugh and be cuddled while watching his favourite movies. Walt passed away at Rainbow Place in November 2018.
We so appreciate the care Walt and our family received and we really want to give back if we can. This is why I am now volunteering my time at Rainbow Place, it’s just a small something that I hope might make a difference to Rainbow Place and the amazing children and families it serves.
Emma
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