On the 16 October, my brother and I will be running the Yorkshire Marathon to raise money for Lymphangiomatosis & Gorham’s Disease Alliance (LGDA). This will be in memory of our cousin’s little boy, Coby, who was diagnosed with Gorham’s Disease when he was 3 and sadly lost his battle on the 23 May aged just 9.

Gorham’s Disease is an extremely rare bone disorder associated with abnormal blood vessel growth. It essentially results in bone loss and can occur in just one bone, or spread to various other bones in the body. There have only been a few hundred cases of Gorham’s Disease reported worldwide. The cause is unknown and there is currently no cure. This makes managing and treating the condition a very daunting and difficult task and makes fundraising for the LGDA, all the more important.

Coby was so brave. He fought every day, never letting his weak bones, pain, fractures, scans, tests, surgeries and many hospital appointments stand in his way. He was such a happy little boy, loved by anyone who had the pleasure of meeting him and there won’t be a day goes by where we won’t miss him. We know nothing we do will bring him back but hopefully fundraising in his memory will at least help others.

The LGDA provides support to patients and their families affected by rare bone conditions such as Gorham’s, provides education to families, the public and medical professionals, as well as funding research that will improve understanding of these diseases and establish best practices for their diagnosis and management and hopefully one day, find a cure.

We’ve set a target of £1,000 and we’d be over the moon if this target can be reached. If we can exceed it with your support, it really would mean the world to us and the whole family.

Thank you.

Jordan and Jacob x