Become a Volunteer

Society for Mucopolysaccharide Diseases
MPS House, Repton Place, White Lion Road, Amersham, Buckinghamshire, HP7 9LP, UK
Tel: 0845 389 9901 Fax: 0845 389 9902
National Registered Charity No. 287034

Become an MPS Childcare Volunteer

Have you ever thought about becoming an MPS childcare volunteer?
Volunteering is fun and rewarding. It could also help you learn new skills and gain valuable work experience. The MPS Society relies on volunteers for our events and conferences to assist in the care needed for children and young adults affected by MPS and Related Diseases. All of our volunteers undertake training in moving and handling and are fully briefed prior to the event. Volunteers should be 18 years or over, will need to provide two references and undergo a Criminal Records Bureau check. Those volunteering for our conferences will receive accommodation and all meals throughout the weekend. If you are interested to learn more please contact our Volunteer and Event Co-ordinator.

Interested? Read Paul's experience...
As a somewhat hard-bitten and slightly cynical professional sales person, it generally takes a lot to move me towards genuine expressions of enthusiasm for anything that isn’t directly related to paying off my mortgage. So when I was volunteered by a powerful combination of my wife and MPS Outings Co-ordinator Helen Patterson to help at the MPS National Conference, I have to confess I did so with a mixture of quiet resignation and trepidation at what might lie in store for me over the weekend.

When I then heard that my main tasks would involve looking after some of the MPS-affected children themselves along with their more mobile siblings, sweat was in serious danger of overwhelming my brow. As my wife will tell you, I have found that looking after my own five little cherubs, two of whom suffer with mild autistic conditions, has proven on occasion to be “something of a challenge” as a professional psychologist might euphemistically phrase it. How on earth was I going to cope with a bunch of kids I didn’t know, some of whom were suffering from a medical condition I’d never met before and didn’t understand, as well as a few potentially lively teenagers?

After an extremely well-run and informative 2-hour training and briefing session in the leafy Buckinghamshire village of Chalfont St. Peter some of my initial fears were allayed, although I did wonder when exactly I would find the time to read through the vast reams of background material they decided to dump on me.

Inevitably the morning of Friday July 1st 2005 eventually arrived, and having gleaned what I could from a few hurried minutes over the previous two weeks looking through the contents of my Volunteer Pack on the Chiltern Line train between London Marylebone and Amersham, I lugged my backpack up the hill to the MPS Society HQ. Straight away I was greeted with an enthusiastic “Hello Paul” from the Chief Executive, Christine Lavery, herself, and that really set the tone for the whole weekend. In business, if the CEO of a company comes to speak to a humble part-time worker of his or her own free will, and gets that person’s name right first time, you can be fairly certain they’re actively involved and interested in every aspect of how that organisation functions, including the welfare of the people they work with. I knew from that moment on that this was going to be a good experience.

Having taken the opportunity to show off my muscular prowess in front of a dozen or so very presentable young ladies by loading countless heavy boxes and two televisions onto the coach, much to our driver Charlie’s obvious irritation, I eventually boarded for the 90-minute run up to Northampton. Again the friendliness and openness of the MPS staff greatly impressed me as we chatted during the journey. It was obvious that Volunteers like me weren’t there just to make up the numbers or do the “less important” jobs - we were clearly seen as a vital part of the smooth running of the weekend.

Once we’d arrived and offloaded at the Hilton hotel itself, and after lunch, a cup of tea and a ridiculously complicated diversion to the nearby Holiday Inn Express to offload a number of the Volunteers’ own luggage, I was deployed for my first real task: looking after a handful of the teenage siblings during “Pots of Fun” and swimming.

Now I have to say that I personally wouldn’t have thought that painting a few china cups, plates and animal figures could capture the attention of an energetic 15-year old boy, but I very quickly learned that these youngsters seem to have an added sense of the importance of accommodating and respecting the needs of others, as they worked quietly and diligently and were beautifully behaved. Each of them spoke with genuine affection about their MPS-affected siblings, and if there can be justifiably be said to be any benefits to the prospect of witnessing the debilitating effects of mucopolysaccharide diseases at first hand, then this must surely be one of the main ones.

Later in the evening, I met the family for the first time for whom I was to have a special responsibility over the weekend, including 15-year old Max, a wheelchair bound Morquio sufferer. I was warmly greeted by all 5 family members, and quickly built up a rapport with Max through time-honoured topics of male-bonding such as football and mobile phones. It was very clear that this lad had a sharp mind and a wicked sense of humour, and was pretty determined not to let his disabilities get in the way of him having a good time!

Saturday morning saw us up and out very early to Drayton Manor Theme Park complete with big dippers and a 360 degree revolving beast of a ride rather threateningly named “Maelstrom” and the beginning of the part of the weekend I had been dreading the most. How was I going to keep an 18-year old young man and an excitable10-year old girl entertained, as well as ensuring that we gave Max all the fun he was looking for without exacerbating his injuries? (like many Morquio sufferers he has recently undergone a spine fusion operation). I needn’t have worried. Mark was clearly protective of his younger brother - almost too protective for an 18-year-old - (aren’t they supposed to be irresponsible at that age?) and also very well used to dealing with his brother’s urge to test his disabilities to the limit, and little Molly was always respectful of the need to make allowances for her sibling. Everyone had a great time.

Saturday evening took us to the Megabowl up by the Sixfields football stadium, home of Northampton Town, for tenpin bowling. Here the challenge was to keep a handle on any boisterous behaviour and watch out for tantrums and the like. Again, no concern was necessary. Everyone behaved superbly, and in my group, the eldest and most able-bodied players, namely Mark and myself, were soundly beaten by Max and his 14-year old friend, fellow Morquio sufferer Sid.

Sunday morning saw us venture just up the road to Gulliver’s Land Theme Park. In truth this was pitched more at the younger children, and at first it looked like I would struggle to find anything that held Max’s interest for very long. Eventually, though, we found a rollercoaster which were just right for Max. Anything with too steep a descent would have put an unacceptable strain on his back and thrown him too close to the guard rail at the front of our car, accentuating his breathing difficulties. This ride had just the right combination of thrills and manageability - so much so that Max nagged me incessantly to repeat the experience. After four times round, I decided that enough was enough, and after a couple of rides in a boat which swung 180 degrees up in the air, we made our way giddily back to the coach, where we were duly delivered back to the hotel for the final lunch of the Conference and the inevitable “Goodbye”.

So why the starry-eyed description of this weekend as a life-changing experience? Well there are far too many individual impressions for me too reveal here, let alone try and place them in a logical and coherent format. These range from the verbal tennis match I had with a 15 year-old Sanfilippo sufferer on the coach back from Drayton Park, which mainly consisted of one person saying “I’ll sort you out” and the other one responding “No, I’ll sort you out” (I think she was flirting with me) to listening to an 18 year-old MPS sufferer revealing her long-term future plans and helping out as a fully-fledged Volunteer. All I can say is I learned more about teamwork, humility, love and hope in a little over 48 hours than I have done in a long while previously.

Thank you to everyone who allowed me to share in this experience, and I think you can safely say I’ll be delighted to be invited back again.