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downsmail.co.uk Family’s life-saving invention
AMARDEN couple are the brains behind a monitor which not only has the potential to save their son’s life – but those of thousands of other peopleworldwide.
Tom Perry (20) has Dravet syn- drome, a rare and potentially fatal form of epilepsy, and lives at St Piers College in Lingfield, a Young Epilepsy college. Tom tends to have his seizures
when he is asleep, so his parents Sue and Adrian, from Marden Thorn, have a seizure alarm under his mattress which detects move- ment, aswell as a monitor to detect any gasps or noises. However, after missing a pro- longed seizure where Tom’s move- ments and sounds were not sufficient to activate the alarms, the couple realised they needed a bet- ter system to safeguard his life. When Tom has a seizure, his
heart rate increases dramatically, so the family began to research a method of detecting his heart rate and transmitting it wirelessly to a device that would provide an alarm if Tom’s heart rate changed. Not onlywould this alert them to
the fact hewas having a seizure but itwould also alert them to early de-
Living with seizures
TomPerry (centre) with mum Sue, dad Adriane, sister Kate Farmer and brother Chris, who have helped to develop the PulseGuardmonitor
tection of SUDEP (sudden unex- pected death in epilepsy). Now, after several years of re-
search and development, the con- cept has been taken through to completion.
Staplehurst-based Adris Tech- nologieswas born and, this month, PulseGuard™was launched. PulseGuard straps to Tom’s ankle
or wrist and monitors the blood flow through the capillaries, de- tecting any rise and fall in the heart rate outside set parameters. Although the company is not yet licensed to sell overseas, orders are
No cure for genetic condition
DRAVET syndrome, also known as Severe Myoclonic Epilepsy of Infancy (SMEI), is a genetic con- dion discovered relatively re- cently by Charlotte Dravet. There is as yet no cure and no- body can say what the life ex- pectancy will be. It starts in a baby’s first year, with prolonged seizures and, in
Plan for new
sport pavilion APLAYING field pavilion could be replaced in Hunton. A planning application has been submitted for a new timber build- ing at the King George V Playing Fields inWest Street to replace the existing structure which dates from 1938. It is said to be in poor condi- tion and beyond economical repair, according to a supporting state- ment. The 91sqm pavilion, with a ridge
height of 4.2m, would be estab- lished in the north-west corner of the cricket ground. The statement said: “The pavil-
ion will be predominantly used for the provision of facilities for cricket during the summer months. It will also be open for use by the local community for events such as the village fete and charity events.” Maidstone Council will deter- mine the planning application.
32 Maidstone South October 2014
the second year, other forms of seizure begin to emerge. People with Dravet syndrome
face a higher incidence of SUDEP (sudden unexplained death in epilepsy) and have as- sociated conditions, which also need to be properly treated and managed.One in 40,000 children has the condition.
flooding in. The company has had enquiries from the USA and the supply chain is in place, ready to copewith demand from all kinds of people who might benefit from this new technology. Tom’s brother Chris has given up
his job as an IT engineer to help their father, who runs a construc- tion and property renovation com- pany, while sister Kate Farmer, an emergency medical technician in the ambulance service, completes the family firm. Chris said: “This is not just any
job – it’s a dream job and it’s also very personal for us.” Clare Harrisson, epilepsy nurse specialist at Young Epilepsy, said: “Young Epilepsy is very excited by the fact that PulseGuard has been developed by the parents of one of our students who has a particularly severe epilepsy syndrome and the potential it has to detect seizures and therefore allow for prompt in- tervention.” Young Epilepsy now plans to
carry out a validation study on the product with young people who live with the condition.
Councillor hit by illness
PARAMEDICS were called to the Chainhurst home of Cllr Dennis Collins after he returned home from a meeting at Maidstone Town Hall. Cllr Collins (56), Conservative coun- cillor for (Coxheath and Hunton) was taken to Maidstone
Hospital, where he is now recov- ering from a serious illness.
His wife Elaine said: “Within
half an hour of getting home he went from being okay to seriously ill. Ten years ago he would have died.” Doctors have said it could be six months before he makes a full recovery.He is not expected to be able to resume his council du- ties for some time. Cllr Collins was elected to the borough council in 2011. He was chair of the planning committee prior to the last election in May.
Quiz night for cancer charity
QUIZ teams can test their knowledge at the Gallagher Stadium on Thurs- day, November 20. The quiz night, which is being held to raise money for Macmillan Can-
cer Support, starts at 8pm, with doors opening at 7.45pm. Tickets are £8 per person for teams of up to eight people, and include nibbles. There will also be a raffle on the night. To book a team or formore information, call Helene Poursain on 07764 503 484 or email
hpoursain@macmillan.org.uk.
BORN a normal, healthy baby, Tomhad his first seizure, which lasted 40 minutes, when he was fivemonths old. Although he
started at Staple- hurst Primary School aged four, the night seizures became more frequent – as many as 24 a night – resulting in regular emer- gency trips up to Guy’s Hospital. By the age of seven, Tomwas
on seven kinds of medication which limited his seizures to seven a night, but he was so be- hind with school that he was moved to Bower Grove School in Maidstone, where he remained until he was 14. Mum Sue said: “It was sug-
gested to us that it would be in his best interests to go to school residentially. This was the hard- est decisionmy husband and I have had to make, but it has been really good for Tom, allow- ing him to mature and learn to be as independent as he can be. “He can now get dressed, clean
his own teeth and is learning to wash his hair himself.” Tomwill have to live in residen-
tial care for the rest of his life with one-to-one care.
Homes plan
for post office AFORMERshop and post office in Laddingford that closed 25 years ago could be converted into three homes. The plan for Glyndalewould see
the removal of redundant shopfronts and the creation of three front garden areas. The removal of an informal off-street parking space would “significantly enhance the setting of the adjoining listed build- ing,” according to a supporting statement. It added: “The removal of the re-
tail use will represent an improve- ment to the amenity of residents to the north by preventing the future establishment of a further commer- cial operation, which would in- volve greater vehicle and pedestrian movements.” Maidstone Council will deter- mine the planning application.
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