This year I am raising money on behalf of a brave little boy called Finley that I have known now for a few years now who has a condition called Sanfilippo Syndrome.

Sanfilippo Syndrome — also known as Mucopolysaccharidosis type III or MPS III — is a terminal, neurodegenerative rare disease. It causes children to lose all the skills they’ve gained, suffer seizures and movement disorders, experience pain and suffering, and then die, often before the second decade of life.

Life expectancy in MPS III is extremely varied, most people with MPS III live into their teenage years, and some live longer, into their twenties or thirties.

At present there is treatment for symptoms as they arise, but no cure for the underlying disease.

The body constantly replaces used materials and breaks them down for disposal. MPS III patients are missing an enzyme essential to breaking down the mucopolysaccharide heparan sulphate. These materials remain stored in the body’s cells, causing progressive damage.

I first met Finley a few years back when he came along to one of my rugby sessions and straight away he stood out above the rest, such a happy little boy that was there solely to enjoy himself and not a worry what anyone else was doing!

In terms of his current condition, Finley is non verbal, but loves to sing (humming tunes) and dance. He is the most caring loving kid and just happy all the time, though has no real underrating of the world around him.

He will get worse.

The main line about the disease is it I very much like having dementia as a child. No cure, no treatments and no hope for him other than having the best life he can however short.

So whatever you can donate to help such a great charity to support these young people and their families would be massive.