Sam's story | The Big Give Christmas Challenge 2020

Updated: Nov 17, 2020


I was excited to hear about the events the MPS Society arrange for families as it meant I could meet other young people with a similar condition to mine.

Hi, I’m Sam and I’m 18 years old. I have ML III which is also known as Hurler Polydystrophy disease. I was diagnosed in 2009 and soon after we heard about the MPS Society and how they can support us. ML III is rare but similar to the MPS diseases and means that my body is affected in lots of different ways.


I was excited to hear about the events the MPS Society arrange for families as it meant I could meet other young people with a similar condition to mine, which was really important to me.


Over the years, we’ve attended conferences, gone on day trips to places like Drayton Manor and even visited Disney World in Florida! We’ve also been to Christmas pantomimes where I normally get serenaded by the cast as my birthday is around Christmas time – very embarrassing!


If anyone does stare, it’s likely they’re checking out your wheelchair to see if it has better gadgets! Yes, wheelchair envy is a thing!

These sort of events are great for me. No one stares if you’re in a wheelchair or you have tubes poking out of your body. If anyone does stare, it’s likely they’re checking out your wheelchair to see if it has better gadgets! Yes, wheelchair envy is a thing! Sometimes we have wheelchair races down the hotel corridors. My brother, Ed has to push me against some of the motorised wheelchairs – tiring for him, but so fun!