Guy-Padmakumara's campaign for Marfan Trust

On 14th February my step-father, Michael Carr, died from congestive heart failure resulting from Marfan’s Syndrome. Though not generally known about, it directly affects the lives of 1 in every 3,300 people worldwide. 75% of cases are hereditary with the remaining 25% from random gene mutation, the gene in question being fibrillin-1.

The most externally obvious signs of Marfan’s are considerable height, with long limbs and potential curvature of the spine. Internally it affects the heart valves (Mike had two replaced) and aorta. Valves suffer from backward billowing, a kind of congestion. The aorta can balloon and this can lead to fatal tearing, what’s known as a dissection. Mike also had one of these, from which he just survived, in 2011, recovering medically as surgery would have been too dangerous.

Mike came into my life when I was 10, possibly 11. He had a profound impact upon my siblings and I, two of whom, Andrew and Anthony, becoming his sons. A passionate believer in education as a means to improve one's prospects, he was very supportive of my going to university, and encouraged all of us to make the most of what education was offered.

An unusual character, equal parts conventional and unconventional, Mike first met Jenny, my Mum, when 30. At that time the average age of death for Marfan's patients was 35. Despite this they commited to each other and Mike became a larger than life character in what was a somewhat madcap household. Indeed, he was often at the centre of the chaos. At the same time he had all his rules, reacting volubly when any one of us contravened them. Yes, this happened often!

Fortunately, as Mike aged, understanding of Marfan's improved, and new treatments emerged that extended the expected lifespan. Mike's first major surgery was at 50 and from this time the medication he had to take increased dramatically. All this he bore with no complaint. Even over the final 18 months of his life, a time of great suffering for Mike, he never complained about the condition, nor the retinue of hospital and GP appointments peppering his diary. It must have been an intense struggle just to keep going but Mike never wained in his desire to be with us.

In his later years Mike became a Trustee of the Marfan Trust and eventually its Chair. He cared deeply for those who also suffered from the Syndrome, and wanted to help by supporting both research and all those directly affected by the condition, believed to be about 10,000 people in the UK.  I don't want Mike's death to be an end to that, and so I'm cycling from London to Brighton on September 13th in aid of the Marfan Trust. All you need to do is donate toward my campaign. I think we can raise £1,000, but I hope it can be more. You can make that happen. Please give now, and tomorrow we'll see better treatments, and, perhaps, an end to Marfan's Syndrome. Thank you.

Padmakumara/Guy

P.S. As the London to Brighton event has been cancelled I will, along with my two sisters, Clare and Natalie, be cycling the same distance (55 miles) from Maidenhead to Abingdon, Mike's home town. We'll be roughly following the path of the river Thames.