Lily is 6 and was diagnosed with NF1 when she was 3. Lily was born with a faulty kidney and during a Doctor’s visit to investigate complications, she was referred to hospital to investigate her café au lait marks and skin bumps (we now know these are tumours). Lily has multiple tumours on her torso and experiences leg pain and fatigue every day, the cause of which is currently being investigated. She has very poor fine and gross motor skills which can make school challenging for her. However, Lily is a real fighter and lets nothing get in her way!

Neurofibromatosis is a neuro-genetic condition affecting the nerve tissue, sufferers may live a long healthy life or they may be dealt with numerous medical conditions which include: skin lumps, large disfiguring benign tumours, tumours on the nerves of sight, curvature of the spine, brain and spinal tumours, internal tumours, increased risk of epilepsy and malformation of the long bones which can cause problems in children and may result in operations/amputation. Neurofibromatosis is more common than Cystic Fibrosis but still there is little known about it.

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