I am participating in the Reading Half Marathon—running, jogging, or walking—to raise funds for Nerve Tumours UK and to spread awareness about neurofibromatosis (NF1), a rare genetic condition that Lily was diagnosed with last year.

Lily is currently facing three known challenges: a plexiform neurofibroma (benign tumor) on her left eye, an optic pathway glioma (OPG) in her right eye, as well as a bony dysplasia in her right fibula. Whilst surgery will be needed to debulk the tumour on her left it will grow back over time. Lily’s vision in her left eye has significantly deteriorated since her last ‘monitoring’ appointment and without surgery she will lose her vision in that eye in its entirety. If the OPG in her right eye begins to affect her vision she will need to undergo 18 months of chemotherapy.

New complications or symptoms could develop at any moment. Despite this, Lily remains an incredibly happy and spirited toddler, full of fearlessness and charm.

Nerve Tumours UK provides crucial support and empowerment for those affected by NF in the UK.

NF1 is a genetic condition that affects 1 in 3000 and causes tumours to grow along your nerves. The tumours are usually benign but may cause a range of symptoms. The severity of the condition can vary considerably from person to person. It is unpredictable. There is currently no cure for NF1, however, most symptoms are treatable.

For Lily and all those affected by NF1 ❤️‍🩹