I am the very proud and very lucky dad of twin boys, Ben and Ollie. When the boys were three-and-a-half years old they were diagnosed with Sanfilippo Disease. This is a Mucopolysaccharide storage disorder, also known as Mucopolysaccharidosis Type III.
We were told that there is no cure for MPS diseases and that the boys would have delayed learning and would lose all of their abilities, such as speech, walking, eating and being able to do all of the normal things that you take for granted that your child will do as they grow up.
There are no medical miracles or happy endings waiting for the boys, or us as parents, but we both feel lucky to have the boys even for a limited amount of time. Tragically we learnt this pain in October 2012 when we lost Ben just before his 10th birthday. He passed away in his sleep due to a storage build up on his brain caused by his condition.
I understand that my son’s death is tragic and I am filled with fury and rage over it; but please don’t suggest that his death and even his suffering, doesn’t make his life any less fulfilled. Let me assure you that he accomplished more in his short life than many who squander their time on this planet, and he has brought so much joy and happiness to so many, as has his brother.
We were over whelmed by the numbers in the church for Ben’s funeral and the warm messages and memories of Ben that people shared with us. When either Fi or I talk of our children, it is with pride and happiness and we know that they have made our life’s so much better for sharing their life’s with them, no matter how short…. But the greatest thing we can say is that we had the honour of being their parents and that they loved us as much as we loved them.
When you have a child with a life-limiting condition you are not able to leave them with anyone, they need to be cared for and looked after by someone who understands their condition.
In our case this means we cannot leave our boys with grandparents on their own… so we don’t have nights off. To go out requires military planning. Simple things; like going for a day trip, a meal to celebrate a birthday, or having some me time, is just not possible.
Helen & Douglas House offers us that help for some respite time. We don’t have to worry, we can go out and leave Ollie happy and content and have the peace of mind that he is having fun and being cared for as if he were at home with us. Without this help we would be looking after Ollie 24/7 without a break and this is not good for him or us. You need time to recharge the batteries. Getting up two to three times a night is draining… or no sleep at all at times.
In our darkest hour when we lost Ben, 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 Ben. 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 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.
Over the years whilst my family has been using Helen & Douglas House, I have personally wanted to give something back for all that they have done to support us. I have done this through fundraising events such as holding charity golf days in Ben’s memory, skydiving, running various events such as the London Marathon, London 10K, the fabulous Santas on the Run. I have cycled different events, which included cycling the Ridgeway in a day with work colleagues and friends, and we have hosted charity balls. It is difficult for me to do these things as much now as Ollie requires a lot more one to one care and I cannot be away for too long, so I do more after dinner speeches to businesses or at charity events to raise the profile of Helen and Douglas House, to hopefully inspire others to do more for the charity, but I know that this is something I will always support and I will push myself to do more of when possible, especially now during these difficult times for the charity.
You can help by taking part during the Radiothon on 7th, 8th and 9th March by:
• Listening to stories like Imogen’s on JACKfm and Union JACK online or on DAB and making a donation.
• Calling into to make a donation on 01865 796777 during the Radiothon.
• Making a donation by texting JACK5 to 70500 to donate £5 or JACK10 to 70500 to donate £10.
• Organising a Rock the Radiothon fundraising event using our great pack.
• Tune in and share your thoughts using the #HDHRock hashtag.