Our son needs medical help not available in New Zealand.
New Plymouth, Taranaki
After a traumatic birth we were relieved to be told our son was healthy but Levi had a surprise for us, he was actually born with down syndrome and two rare bowel disorders which has meant he has had to bravely endure many surgeries.
Levi (4) has never tasted his own birthday cake or eaten at a family gathering. He could manage a very small amount of solids at first but not enough to thrive. A Mickey button was inserted into his stomach to allow us to feed him.
Sadly, one of his rare disorders, a congenital bowel blockage remained undiagnosed for nearly 4 years, causing him excruciating pain and this led him to stop eating altogether, leaving him with a traumatic food aversion.
We only found 11 case reports worldwide of people with both these disorders. Levi may be the only person in NZ.
Now medically stable after surgery to unblock his bowel we cannot wean him without expert help that is unavailable in New Zealand & Australasia.
Levi has been accepted for treatment by the world leading expert in tube weaning complex children, Dr Markus Wilken of Germany. This is very expensive as our choices either to head to Europe or to bring Dr Wilken and his colleague to New Zealand to finish Levi's wean. This is an intense therapy process & we need to fundraise to make this happen.
We would be greatly humbled by whatever help is generously offered as this will be life changing & will make Levi's future much brighter, allowing him to enjoy food & have greater independence.
Costs of Levi’s wean. If we don't reach our goal or there are extra funds we will use for Levi’s other medical needs (we need to find an expert in toilet training complex children), we may even be able to help another complex family wean their child.
Levi is back home and eating!!!! 1 August 2023
We just wanted to update Levi's page one last time and thank everyone who donated to help get Levi to Austria for treatment again. The treatment worked and he has been eating for the past 8 weeks!
We cannot say thank you enough to everyone who helped to make this happen, it has completely changed Levis life and we are so excited for what the future holds now.
https://i.stuff.co.nz/taranaki-daily-news/132519315/the-boy-who-didnt-eat-now-smashing-back-meals-thanks-to-lifechanging-treatment#:~:text=Levi%20Coleman%20has%20returned%20back,thanks%20to%20life%2Dchanging%20treatment.
Thank you Tristan x
Thank you David x
Thank you x
Thank you Kaye x
Thank you Mei xxxx
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