We have known Paul & Marianne for many years, and have known Emilie since she was born. Until recently we didn’t know why her development was so delayed, because since 8 months of age reaching any milestone has been a challenge for her. She is 6 weeks younger than Florence, our youngest daughter. Genetic science has moved forward apace and through new testing techniques Emilie has been given a diagnosis of a rare condition affecting only 5 other people in the UK.

The condition is called Beta-propeller protein associated neuro degeneration (BPAN). It is potentially life-limiting. Over time this condition means iron is accumulated in the brain and abilities that Emilie has worked hard to achieve will be lost. Stunned, Paul & Marianne decided to contact the NBIA Disorders Association in the US. They are holding a family conference in Chicago in June 2017. Paul & Marianne plan to be there with Emilie to meet specialist doctors, researchers and to meet to other families.

This is a big undertaking for the family. They are looking to raise £12,000 for the trip. They are progressing well with fund raising and organisational plans, but have recently met a hitch: Paul and Marianne have received their Esta's to enter the US, but Emilie's entrance was refused. They had to attend the American Embassy in London to try and get her a visa to enter the country. This was no mean feat: Emilie is not suited to public transport, so the family had to book a taxi at their own cost to transport them to London and back in order to obtain the necessary paperwork for them all to travel to the US.

I am running the Bristol Great Run 10k in May and hope to raise £1,000 to provide funds for Emilie's current and future care needs. Please help me by pledging money to this wonderfully caring and warm family to help them. Please visit their web page to find out more details: www.fundraisingforemilie.org.

Thank You for your help! It is much deserved!