Katie Smith Fund Raising Group
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KATIE SMITH FUNDRAISING GROUP
​The Katie Smith Fundraising Group as been set up to raise awareness of Neurofibromatosis (NF1) and Scoliosis and to also raise funds for Katie’s short & longer term care. The Fundraising Group also hope to raise funds for two charities - The Neuro Foundation and SAUK (see below).
The group, which has a written constitution, organise fundraising activities as well on ongoing awareness campaigns.
A Face Book Page has been set up called Katie Smith Fundraising group: https://www.facebook.com/Katiesmithfund
The two charities: The Neuro Foundation - is the main charity in the UK helping to improve the lives of those affected by Neurofibromatosis. Their website is: www.nfauk.org . They are a small charity who need help in raising money to support the work they do to help those with NF and their families. Raising awareness and understanding of what NF is & how it affects people like Katie is vital.
The Scoliosis Association UK (SAUK) aims to provide advice, support and information to people with scoliosis and other spinal conditions. Website: www.sauk.org.uk

​Katie Smith:
Katie is a very special 11 year old who was diagnosed with Neurofibromatosis (NF1) and scoliosis in 2009. Katie lives in Idle, Bradford. She goes to school and enjoys life with her family and friends but suffers from chronic back, chest and leg pain on a daily basis. Katie gets tired very easily as she finds it very difficult to sleep during the night due to pain and discomfort.
As part of her NF1 Katie has a large plexiform tumour next to her spine which is causing a number of complex medical concerns. In Sept 2012 Katie had an operation to remove part of a tumour on her back as it suddenly started growing. Katie had a further operation on her back in July 2013. Sadly it’s likely that Katie will have many more operations as she gets older.
Due to the scoliosis, and the impact of the tumour near her spine, Katie’s spine was curving at 85 degrees which is further impacting on her pain and mobility. Katie underwent complex and risky surgery for her scoliosis at the LGI in January 2014. She was 10 years old at that time. The spine surgeon inserted a new type of magnetic growing rod (MAGEC) into Katie’s spine and at the same time the paediatric surgeon removed a section of the tumour inside to help make room for the rods. This surgery was high risk and complex and involve a long recovery period. See blog for the day by day diary of Katie's 12 days in hospital. The rods are now extended every three months.
All these are temporising measures until she is big enough (around age 12+) for full spinal fusion surgery. Hopefully whilst this will help the scoliosis in the longer term, it does not help with the Neurofibromatosis (NF1). There are over 25,000 people in the UK affected by the condition and as yet, there is no cure. Neurofibromatosis (NF) is a genetic disorder that causes tumours to grow anywhere on or in the body.
Katie has NF1 and although most cases of NF1 are mild to moderate, NF1 can lead to disfigurement; blindness; skeletal abnormalities; dermal, brain, and spinal tumours; loss of limbs; malignancies; and learning disabilities. Unfortunately Katie has complex NF1.
During Summer 2014 Katie had increasing problems with her right leg and has been unable to bear any weight on the leg since then. She's therefore using crutches & wheelchair on a full time basis to get around.
