13 September 2019
Kloe van der Merwe - Our NF hero as told by Mum Candice
Kloe Rae was born fighting but it was only when her cafe au lait spots started to develop before she was a year old that her parents started to make the links. Kloe, although under investigation, only saw the complex team when her parents started to notice in March 2018 that she was developing a secondary condition, a progressive and severe scoliosis in the lower thoracic and upper lumbar spine. Plexiform neurofibromas were identified in MRI scans that followed leading to her diagnosis (4 years old) and surgery (5 years old). Together the world class Neuro and Spinal team at Manchester Children’s Hospital worked timelessly to come up with a plan that would allow Kloe to have the surgery she required but one that would also not see her having to go back to theatre every six months. Kloe underwent major spinal surgery for the insertion of Magec spinal rods and was fitted with a spinal jacket post-operatively to ensure the safety of the rods. Her follow-up from hospital requires 3 monthly visits for lengthening in clinic, with subsequent surgery around 2 and 5 years independently. With a final fusion when Kloe’s growth is complete.
Since, Kloe has the developments of a left optic pathway glioma which require close monitoring but the changes in the MR scan of the brain remain stable.
Kloe now age 6 still does not let her NF define her. Although she has a magnitude of obstacles to overcome she is a vibrant and determined little girl who doesn’t have time to be sick. She is a happy go-getter with a tenacious fighting spirit, one that inspires us to be more like her everyday. Her diagnosis has given us a sense of urgency to make a positive impact in life where we are not only striving to be our best but thrive! Her family and friends take comfort from her strength and hope that by sharing her story that it may become someone else’s survival guide.
As a family we would like to give back where we can, raising the much needed funds for research into NF. Every little helps make a big difference.
#Kloeraebornfighting #livingherbestlife #endNF
If you would like to donate to the families fundraiser then please click on the link below
"Kloe now age 6 still does not let her NF define her. Although she has a magnitude of obstacles to overcome she is a vibrant and determined little girl who doesn’t have time to be sick"
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