The S&B Raffle

This year, myself and Andy made the decision to offer our S&B loyal a monthly raffle.

Each month we would sell one hundred tickets, each time for a chance of winning a prize. You guys took to this straight away, we all love a small gamble don't we. We kept the ticket price as low as we could to tempt you and made the prize value as high as possible. I would also like to say that I think you're all such a good bunch that if we chose to support a charity each month with no prize, you guys and gals would be right behind us.

I would like to thank each and everyone of you who have had a go this year. December will be our 7th raffle and we plan to continue to run these for each month of 2022 too with bigger and better prizes.

All of this aside, the reason we set this up was to put a little back into charity, you get that warm feeling inside for doing the right thing but also have the chance of a golden ticket. So far we have supported Macmillan, YoungMinds, Wonky Pet Rescue, Blood Bikes, FootPrints and Movember. 

This month though we got in touch with a couple of our friends and asked if we could support a charity for them which is MPS society, I also wanted there view on how important a charity is and how it can help.

Please read below

In October 2009 our eldest son was diagnosed with a rare life limiting illness called Sanfillipo syndrome type B (MPS IIIB). In an instant our world fell apart.  Our sons condition is so rare that the consultant delivering our diagnosis handed us a google print with information about the condition. 

As we tried to come to terms with the devastating news we’d received we were advised to make contact with the MPS Society, who are the only registered charity in the U.K. specifically supporting families with a diagnosis of an MPS or related disease.

In the weeks that followed we had one hospital appointment after another and quickly realised that our path would be incredibly difficult, yet we faced each day with a determination that we would make everyday count for Jacob and his brother and this has been our driving force for the last 12 years. 

The MPS society have been there throughout our journey, in the very early days they provided advice and information about the condition, they also had the knowledge to support us in making longer term decisions around schools, adaptations and care support.

As budget cuts across the country have impacted every area involved in supporting Jacob and his complex needs, the expert advice and support the MPS society provide has been invaluable. Our advocate has been there by our side in meeting after meeting and carried us at times where we’ve been so exhausted by the constant battle for services Jacob is entitled to and and so rightly deserves. 

The MPS Society have been pivotal in introducing us to other families in similar situations. As difficult as it can be meeting other families, especially if they’re further along in their journey, it’s always very comforting to be able to share experiences and advice and to know we aren’t alone.

The MPS Society are very aware of the isolation MPS affected families feel on a daily basis. The Covid pandemic has only exasperated this feeling as most of us found ourselves on the official shielding list. Virtual contact with others became a valuable tool and was quickly established as a route to share advice and best practice and to continue to bring us together in a social aspect. Face to face contact is a luxury we simply do not have due to our sons deteriorating health and the risk COVID poses to him. As such these interactions have been invaluable to us all.  

It’s now 12 years since our diagnosis. Jacobs health has changed dramatically these last couple of years and the challenges we face now are very different to 2009. We find ourselves in the final phase of Jacobs disease. Our journey has been tough, every day presents a new battle and things can change at the drop of a hat. Support systems around us have constantly changed, professionals have come and gone but the MPS society have remained a constant in our lives. 

Hannah

Mummy to Jacob MPSIIIB

Mucopolysaccharide (MPS) diseases are a family of rare, life-limiting lysosomal storage disorders that can affect both children and adults. Mucopolysaccharides are long chains of sugar molecules used in the building of bones, cartilage, skin, tendons and many other tissues in the body. Usually, there is a continuous recycling process of building new mucopolysaccharides and breaking down old ones.

For people with MPS diseases, there is not enough of a particular enzyme to break down used mucopolysaccharides which means they build up and store in the cells in the body which causes progressive damage.

With Sanfilippo Syndrome (MPS IIIb) it is primarily the cells of the brain and nervous system that are relentlessly damaged in this way. Over time this damage impacts upon all areas of an affected child’s mental and physical health. Average life expectancy is just 15 years.

For more information on the MPS society please see the link

https://www.mpssociety.org.uk/