Re: Autumn issue | Page 22

SUDEP Action Michelle Samuel, who lost her sister to epilepsy, attended a 10 Downing Street reception hosted by Samantha Cameron for SUDEP Action. The night launched the charity’s appeal for research into a sleep monitoring device that could help prevent Sudden Unexpected Death in Epilepsy (SUDEP). Michelle attended the event with her husband Andrew Samuel. Her sister, Diane Croft, was only 20 when she died in February 2004. Michelle, from Heathfield, East Sussex, has been working with SUDEP Action to raise awareness and support research into SUDEP. Epilepsy claims at least 1,150 lives a year in the UK and about 500 of these are SUDEP. At the reception, Mrs Cameron met with all charity supporters and staff. The event brought together SUDEP experts, policymakers and families bereaved by epilepsy. is proved to detect apnoeas. Professor John Duncan of University College London created it through a partnership between researchers at the National Hospital in London and Electrical Engineers at Imperial College. Michelle said: “When Diane died, I could not imagine how life could carry on without her. Life is never the same after you lose a loved one. I still grieve but I am also proud to be involved with SUDEP Action and to help prevent unnecessary epilepsy deaths.” Jane Hanna OBE, Chief Executive of SUDEP Action, said: “We are very grateful to Mrs Cameron for generously hosting us and helping us raise awareness of this issue. Apnoea is a leading contender as a cause of SUDEP. At the moment there is no reliable method to detect apnoea in the home with the consequences that there are hundreds of preventable deaths every year in the UK. ” As part of its work in supporting research, the charity is also currently promoting the first register of epilepsy deaths in the UK, aimed at supporting research into epilepsy deaths. The register is providing researchers with vital clues that will help them understand and ultimately prevent SUDEP. The charity began as a campaign by five women, Jane Hanna OBE, Sheila Pring, Catherine Brookes, Sue Kelk and Jennifer Preston. Jane’s partner and Sheila’s son Alan died in 1990, aged 27; Catherine’s son Matthew died in 1991, aged 21; Jennifer’s son William died in 1988, aged 22 and Sue’s daughter Natalie died in 1992, also aged 22. They were all young and active people who died suddenly and unexpectedly. By Juliet Tumeo www.sudep.org Funds raised from the appeal will sponsor research into the sleep device that will be used to alert carers to dangerous apnoeas that can cause sudden death. The device is a miniature Wireless Apnoea Detection Device (WADD) that 20 She added: “We need at least £165,000 to test this device on people with epilepsy as the next step towards a system that may be highly reliable for preventing SUDEP. We are grateful for supporters like Michelle and Andrew who continue to raise funds for the charity and make such projects possible.” Round and round the Mulberry House Our recent merger with long established firm Stuckey Carr & Co has meant that we have two additional offices and have welcomed new staff members to the Mayo Wynne Baxter fold. We can now put Storrington and Pulborough pins on the map. Our Storrington staff are lucky enough to work from an office steeped in history as it forms part of Mulberry House at The Square, in the heart of the village. An article that appeared in Home Magazine and the Ladies Field published in May 1929 featured an article written by Gwendolyn Oerton. In it she describes the house inside and out in great detail: “This Georgian house in an oldfashioned Sussex village is the country home of W. Harkess Esq., A.R.I.B.A. The fact that it is six miles from a station does not matter in these motoring days; it ensures on the contrary, a certain amount of pleasant isolation. Storrington is on a road which carries a good deal of summer traffic, but its old-world atmosphere has not suffered much thereby. The history of Mulberry House is by no means clear; the oldest inhabitant says “doctor lived there a time back and built on a bit.” Gentry have apparently always had it. The house has a partly walled garden of no great size but judging from the trees growing there, it must be getting on into its second century. Originally a double-fronted house, two windows wide on either side of its delightful door, an addition has been casually made to the eastern end; the space between the windows was not measured with any degree of accuracy - otherwise the extension is hardly noticeable. There is the correct low mansard roof but it is tiled instead of covered with the expected slates. At either end there is a chimney stack and high up over the second floor is a solitary fan-shaped window. The sashed windows are large for the size of the house and come to within a short distance of the floors; the front door is practically flush with the garden level. As is so often seen in Georgian houses, the portico has columns framing it and a graceful fanlight to admit daylight into the hall. Our ancestors believed in security and all the windows are provided with wooden shutters. The original plan of the north of the garden elevation has been obscured by the building on the various times of extra domestic accommodation and bathrooms but for all that it presents a homely and comfortable aspect. The walls on this side are of mixed stone, faced with brick. Fine specimens of yew, cedar of Lebanon, chestnut trees and various cryptomeria are planted about the lawn; the rest of the garden is quite informal and old-fashioned – there are grass walks, flower borders, a pond, various old garden ornaments of stone and last but not least, a real 18th-century stone grotto! One of our pictures shows it in the distance, approached by a grass walk, on either side of which is a flowering border where such things as a phlox, love-in-a-mist, catmint, marigolds, and horn poppies gloom gaily. In the foreground is a pair of stone vases exactly like Georgian wine urns on a gigantic scale. The approach to the grotto is guarded by two large unclipped yews. As to the grotto itself, the Sussex flints of which it is built are nearly hidden by a mantle of ivy, but we can see one or two of the pillars, and catch a glimpse of a stone vase on the top. In the old prints of such places as Cremorne and Vauxhall Gardens similar grottoes were depicted: ‘twas there the Georgian dandies dallied with the ladies who had 21