Little girl diagnosed with neurofibromatosis aged five ‘never ceases to amaze’ – Daily Echo

STEVE Brine MP met a family of constituents as they marked World Neurofibromatosis Awareness Day at Winchester Cathedral.

Mr Brine met Sarah and Pete Burbridge, and their daughter Lilly, who was diagnosed with neurofibromatosis type 1 at the age of five.

The family live in Harestock and contacted the MP who until recently had responsibility for the UK rare diseases strategy as the public health minister.

Every day in the UK, a child is born with Neurofibromatosis – some inherit the condition, others are affected by a random mutation.

It can be life-limiting and impair the quality of life.

Mr Brine said: “I was so pleased when Sarah reached out to me on this, and delighted to meet up with her and Lilly, as well as the rest of the family.

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