Mike tells us about being a dad to twin boys, Ben and Ollie. Both boys were born with a life-shortening condition and diagnosed, aged three and a half, with MPS – Sanfilippo 111A which is a metabolism disorder that delays development and causes significant neurological symptoms. Sadly Ben passed away in October 2012, shortly before his 10th birthday and Mike then lost Ollie in May 2018, aged 15.
Mike was told that there is no cure for MPS diseases and that the boys would have delayed learning and would eventually lose all of their abilities, such as speech, walking, eating and being able to do things that you might take for granted that your child will do as they grow up. There were no medical miracles or happy endings waiting for the boys, but Mike feels lucky to have been their father even for a limited amount of time.
Mike said ‘When I talk about my boys, it is with pride and happiness and I know that they have made my life so much better for sharing their life with me, no matter how short… But the greatest thing I can say is that I had the honour of being their Dad and that they loved me as much as I loved them.
In our darkest hour when we lost Ben and Ollie, staff from Helen & Douglas House were at the hospital to support us, and we stayed in the house to give us support and to be close to the hospital so that we could visit the boys. The support we received was beyond any words of thanks I could give and we also had support from familiar faces at his funeral. They have also been so helpful in helping with our grief from the loss of Ben and Ollie and helping us to pick ourselves up and try to get on with our lives. We can honestly say that the staff have become a second family to us and we are so fortunate to have this fantastic hospice on our doorstep as life would have been that much harder without them.
We had been visiting Helen & Douglas House for about 15 years, and still receive support from them. As soon as we entered the front door, the boys came first, and we as parents after. It truly is an amazing place. It puts the emphasis on making the most of life for you as a parent as well as for the child, and you make some amazing friends who understand your daily struggles. It has made me appreciate everything they have done for me and my family, which is why I try to give a little something back now through fundraising and trying to promote awareness of the charity, such as my annual golf day which is now in memory of Ben and now Ollie. I want to tell as many people as I can about the amazing work Helen & Douglas House does for everyone lucky enough to walk through their doors.’
