Helpline 07939 046 030

Kloe van der Merwe - Our NF hero as told by Mum Candice

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"

– Candice

Filter News

Filter by Date
Category
Reset

Ella’s Blog: The Flu Jab

Ella's updates on the impact of coronavirus on her daily life

Read More

Thank you for taking part in our World NF Day: 2.6 mile Garden Challenge!

Find out what our amazing NF supporters got up to on World NF Day!

Read More

Stewart Lee Member of the Board of Trustees who has NF2 on Lockdown Life

Let's celebrate World NF2 Day, because we live our lives with such a hard condition; let's focus on how amazing we all are!

Read More

Tom GK in Lockdown

NF2 can be a lonely business; but now there are 60-odd million people in Britain who have all learned how precious & fragile

Read More

Emily Owen Member of the Board of Trustees takes over our Social

‘All the World’s a Stage…’ (Shakespeare) Welcome to our World NF2 Day 2020 Theatrical Entertainment

Read More

Face Equality Week 2020

Changing Faces continues to campaign amidst the current crisis - Face Equality Week

Read More

World NF 2 Day May 22nd 2020

See what we're up to for this World Neurofibromatosis Type 2 day

Read More

Statement by Mary Thomas Clinical Neurofibromatosis Nurse UK

A statement on coronavirus by Mary Thomas clinical nurse at Guy's and St Thomas' NHS Foundation Trust

Read More

Second Face Equality International Week

Find out more & how you can take part

Read More