ABOUT US

The Katie Smith Fundraising Group as been set up to raise awareness and also raise funds for Katie’s short & longer term care but to also raise funds for two main charities.

The group, which has a written constitution, organise fundraising activities as well on ongoing awareness campaigns. The group has a bank account with HSBC.

A Face Book Page has been set up called Katie Smith Fundraising group: https://www.facebook.com/Katiesmithfund

Katie is a very special 10 year old who was diagnosed with Neurofibromatosis (NF1) and scoliosis in 2009. Katie 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. Katie lives in Bradford (West York’s) and has a twin brother called Joseph.

As part of her NF1 Katie has a large plexiform tumour next to her spine which is causing a number of complex medical concerns. She also has large neurofibromas (she calls them her ‘tummy mark’) on her torso which are painful and she is very scared and anxious of being around many people. She is scared of someone accidentally bumping into her and hurting her. In addition she does not like anyone to touch her skin and finds it very difficult to wear certain clothes as she does not like anything pressing on her ‘tummy mark’. In Sept 2012 Katie had an operation to remove part of the 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 diagnosed as being curving at 50 degrees in Summer 2012 sadly this curvature has progressed rapidly and in May 2013 was at 80 degrees. This further impacts on her pain on mobility. It was hoped that in summer 2013 she would undergo major surgery to insert growing rods into her spine but to also remove part of the plexiform tumour. The spine operation took place in January 2014.

On 21st January 2014 Katie underwent a complex and risky surgery for her scoliosis. The spine surgeon inserted a new type of magnetic growing rod (MAGEC) into Katie’s spine. 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 will involves a long recovery period. However Katies surgery went amazingly well. See blog for the 12 day diary of her stay in hospital.

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. There is currently no cure for NF1. In addition to chronic pain due to the complexities of having both conditions, Katie also has speech problems and attends regular speech therapy sessions.

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 and as a result has a variety of health problems.

Katie also has Scoliosis, curvature of her spine, which has also impacted on her health.

Medication: Katie needs to be given medication several times per day to try and help with the pain – despite this she is often in pain & discomfort and finds it difficult to sleep at night.

Mobility: Katie is in a lot of frequent, regular pain in the back, sides, chest and increasingly in her legs. The pain is made worse if she has to move about too much. Also due to the lack of sleep each night she is constantly tired. She uses a combination of her wheelchair & crutches to get about.

Specialists: Katie is under the care of the many different medical specialists, due to the complex nature of her condition(s). This includes day patient appointments for MRIs under general anaesthetic, biopsies, physio, speech therapy, x-rays, PET scans, CT scans, detailed eye tests, sessions with the pain team and psychologists. Katie is under the care of the Bradford hospitals, the Leeds hospitals and under the care of an NF Specialist at Manchester.