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!
Sometimes, when I'm at a hospital appointment I recognise some of the people from the events and it feels good to see familiar faces.
It's also really nice to be able to hear other people’s stories. We share experiences with each other and give advice and offer information and guidance on certain life lessons we have learnt along the way. We still have great connections with people we have met at events which is great. Sometimes, when I'm at a hospital appointment I recognise some of the people from the events and it feels good to see familiar faces.
When COVID-19 came along, the MPS Society had to cancel all of the family events for 2020. Now we are trying to help them raise £15,000 to fund some fun and exciting 2021 family events so we can all meet up again and I hope you can help.
All you need to do is make a donation between 12 midday on Tuesday 1 December and 12 midday on Tuesday 8 December. During this time, donations will be matched pound-for-pound at no extra cost to you and it means your donation will be worth twice as much to the charity.
Just visit www.mpssociety.org.uk/christmas between those dates to donate online.
Thank you for any donation you can make, big or small.
Your support means the world to me!
Love, Sam. x
In this video Sam and Edward share more of their memories from the family events they've been to as well as singing a special message for all the families and people that work for the MPS Society.
