Charlee and Jorja (4 years old) were born 9 weeks early and spent the first 6 weeks of their lives in Christchurch Womans NICU. Charlee had a few wee problems and needed to have oxygen on and off for a few days. After we left and were at home we did not realize that there were any problems with either of our girls. Jorja was first to get up and go and has never stopped! Charlee was a wee bit behind and we noticed that when she finally pulled herself up to stand at the age of 11.5 months old that she was always on her tiptoes. But mother’s intuition kicked in and I kept going back saying she’s not crawling, she’s bouncing across the floor. It wasn’t until we moved and went under a new Pediatrician that we were told she needed an MRI. That was November 2014 when she was just 2, and a few weeks later we were told MRI is all clear. But as parents we knew that something was still amiss.
8 months after the MRI we had an appointment with our pediatrician, (what we thought was a normal appointment) to be told ‘we are sorry to tell you that when you were given Charlee’s MRI results last year they were in fact wrong, Charlee was born with PVL (Periventricular leukomalacia). I sat there like one of those dogs on people’s car dashboards just nodding away saying ýes, yes, yes’. This has caused Charlee’s CP, (still sitting there nodding and say yes like a robot). I left put the girls in their car seats and sat and cried.. I didn’t know what had just happened. So here we are June 2016 19 months later with the best news for our Charlee, that a Doctor in America can perform an operate called SDR (selective dorsal rhizotomy) and help her live a ‘near normal’ life! For her this means being able to run, walk and play without falling over, without injuring herself. Riding her bike, climbing trees and hills, but most of all keep up with Jorja whom is never far from her side and always there right beside her when she falls to give a cuddle to make sure she is ok. This operation will not only change Charlee’s life but the entire families. For us to get to America we need to raise at least $120000, as the 2 operations she will have come to around $87000 alone. We need to be there for 5-6 weeks as after her operation she will have 3 weeks intensive physiotherapy. Our give a little page is https://givealittle.co.nz/cause/charleessdr
We also set up a facebook (Charlees journey to SDR) page so that people can watch her progress and to help us spread the word to help us make her dream of ‘getting her leg fixed’ (her words) a reality.
