My great nephew, Josh, who is six years old has been diagnosed with Metachromatic Leukodystrophy, which is also known as Juvenile MLD.

This was diagnosed after concerns with Josh's mobility. After several tests and scans, white matter changes were seen in his brain and this diagnosis was confirmed.

He then had further tests to identify the cause and if there was any treatment for the condition. The tests found that Josh was lacking the enzyme which maintains the myelin sheath in the nervous system and protects the nerves throughout the brain and body- without this, sulfatides build up and destroy the myelin sheath and the nerves in the brain cease to work properly.

This condition is extremely rare and is a life-limiting disease, which effects approx. 1 in 140,000 children and at present there is sadly no known cure.

I have decided to do a fundraising event to help support Josh with anything he might need and create happy memories for him, while we still can and to enable him to participate in activities and travel before there is any further deterioration in his condition.

We will also donate to charities who are supporting Josh, such as Make A Wish and Shooting Star hospice and by doing this event and others, we can hopefully raise awareness of this condition and the need for new born screening.

With the support of my employer, Southwestern Railway, I am able to put my fundraising event in place.

On Sunday the 26th June, in the Isle of Wight, we will be holding our charity walk, which will start around 10:00am and we will walk between Sandown and Ryde, which is a half marathon totalling 13.2 miles. There will be refreshments supplied at the end by the SWR Island Line team at Ryde station.

We would welcome anyone to walk with us or just come along to support if you can, or please donate so we can reach our goal!

I will be completing the walk in fancy dress! The theme is superheroes or favourite characters so if you are planning to come along, please feel free to dress up! It should be a great day with great people!

Thank you in advance for your support with raising vital funds, awareness and special memories for Josh x