STEVE Brine MP met some very special 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 years.

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.

“Neurofibromatosis is classed as a rare condition but it’s sadly not as uncommon as people think. We urgently need to raise its profile and work with related charities, as well as researchers working in this area, to start developing treatments for children like Lilly.”

Mrs Burbridge said: “Some areas of learning at school are a challenge for Lilly but her perseverance never ceases to amaze us and fill us with pride. We are delighted that Lilly is continuing to grow and develop so well and we are incredibly proud of her resilience. Despite it being a huge challenge, she is now able to ride her bike and is doing well, with support at school. As she grows up we have no way of knowing in what ways the condition will affect her.

“Nerve Tumours UK and The Childhood Tumour Trust do an incredible job and with fundraising and sponsorship, the research into treatment, guidance and maybe one day, a cure may be possible. Funding can also enable more NF nurses to be able to go into schools and teach staff and children about Neurofibromatosis.”

Lilly’s Dad, Pete, is raising funds for nerve tumours UK at Ride London this August;