I’m Sheryl and I'll be supporting the Big Give Christmas Challenge because MPS Society events are important at every stage of your journey when you have a child with a rare disease.
My boys, Ben and Jake, were diagnosed in 2002 with MPS III Sanfilippo A. The very first event I went to was the Paris conference. Over the past 18 years we have attended a lot more events including, Alton Towers, Drayton Manor Theme Park, the national conference in Northampton a few times and, most recently, the tree planting and bereaved weekend at Sherwood Forest. I’ve planted trees for both my boys; Jake, who passed in 2013, and Ben, five years later.
When I first went to the events, it wasn’t so much that I felt at ease with the boys, but I wasn’t so cautious around people and what they were thinking.
When I first went to the events, it wasn’t so much that I felt at ease with the boys, but I wasn’t so cautious around people and what they were thinking. It was for both of them, not to stand out but to fit in that was special for all of us. And I knew if I needed to I could ask anyone anything whilst I was there.
You have time to remember and reminisce with others, it’s almost like you are counselling each other, sharing how you feel, and they get it.
We are still very close with many families we met at the events, especially one family from the bereaved weekend - being bereaved themselves they understand our situation. The people who attend the events are what makes it. You have time to remember and reminisce with others, it’s almost like you are counselling each other, sharing how you feel, and they get it. We get emotional together and cry and it’s acceptable. Unless you have walked in our shoes and lost a child you just can’t understand. We are there for each other.
When COVID-19 came along, we had to cancel all our family events in 2020. Now, we are trying raise £15,000 to fund some fun and exciting 2021 family events so we can all meet up again.
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 us and the families we support.
Just visit www.mpssociety.org.uk/christmas between those dates to donate online.