• Obsessions

    by Tessa Paton | Jun 30, 2016

    The world feels a bit scary just now. It’s unusual for everyone in the country to be anxious about the same thing all at the same time, and it’s distracting, and upsetting.

    Whenever we think about what life is going to be like post-Brexit, whether you wanted it or didn’t want it, you have to use the word ‘probably’. It’ll probably be all right. It probably will be, but the problem with probably is that it’s uncertain, and uncertainty itself is a source of fear, because it stops you making plans to deal with the thing you’re actually scared of.

    I like trees, more than most people, even more than people who quite like trees. I feel a little out of kilter if I’m near a tree and don’t know what kind it is. It’s one of the big things about me, everyone knows I like trees.  If I’m in a boring meeting I might look like I’m concentrating, but I might just be thinking about trees. Not many people get it, but there you go. 

    I know the trees at our Kent hospice where my office is very well now. I know their cycles, which of course are unaffected by things like referendums. 

    Near the oasthouse there is a young tulip tree. That’s very exciting because eventually it will have the most beautiful flowers (which are like tulips) but tulip trees don’t flower until they are about 15 years old, and I don’t know how old ours is. By the look of it its first flower will be some time yet, after the next elections and Brexit negotiations have been and gone and we’ll know more about where we are (probably). The tulip tree will flower regardless, in its own time, living its own life. 

    Trees aren’t permanent though, they grow and change and die, and things can happen to them like diseases or us chopping them down. But they do what they do and they feel no fear.

    Family is a bit like that. Families grow and change and things happen. They do feel fear, but that doesn’t stop them doing what they do, and doesn’t stop them blossoming.  From my office I watch families park up (by the plum trees) and as I’ve gotten to recognise many of them, I notice them changing and the children growing. 

    Trusting in the more solid things that truly protect and support us, especially family, is the way to go when the more transient and chaotic stuff like politics and economics threatens to, or actually does, impact on our lives. Maybe Demelza is a bit like that as well.  We change and grow and have better and harder times, but we’re here, doing what we do.  We’re especially here to keep families strong and supported, for their children and for each other.

    So do you see the thing about trees now? Oh, you still think it’s weird.

  • Demelza celebrates prestigious digital award

    by Stuart Hubbard | Jun 24, 2016
    Demelza is celebrating after winning a prestigious digital award for our new website which launched in January.
     
    We were victorious in the Website: School, Education or Charity category at the Kent Digital Awards, beating off competition from Bedes Summer School, CXK, Kent College Pembury, Manor House Forest School, Parenta and the RNLI Shannon Appeal. 
     
    The awards took place at the Brands Hatch Motorsport Vision Centre in Longfield on Thursday (23 June) with former BBC presenter Robin Bailey hosting.
     
    Judges said: "The positive work of this organisation is reflected in a striking tasteful way, by a website that educates and inspires in equal measure. The frequent and engaging blog updates, further add to a superb user experience."
     
    Our dream to create a vibrant new website with a focus on striking images of the families we support was realised thanks to the help of web developers Itineris and 35-year-old volunteer Simon Asselman.
     
    Father-of-two Simon from Kings Hill, who generously gives his time one day a week, said: “I’m extremely proud to be a volunteer at Demelza. Having been involved in the design and delivery of the new web site from the start, it’s wonderful to see the efforts of our project team be formally recognised with a Gold Award.
     
    “Recognition like this really inspires me to want to do more and I’m eager to see what we will achieve next together.”
     
    Visitors to the demelza.org.uk homepage can also view a video called #ItsAboutLife, which gives an insight into the vital care Demelza provides to seriously ill babies, children and young people and their families across Kent, East Sussex and South East London.
     
    Tessa Paton, Head of Marketing & Communications at Demelza said: “We are absolutely delighted to have won in the ‘Website: School, Education or Charity’ category. Our primary aim was to create a user friendly site and to let emotive images of our care do the talking.
     
    “We also wanted to challenge the misconception that children’s hospice care is consumed with sadness and bring our stakeholders a new site that is vibrant, colourful and captures the essence of what Demelza is all about – Life.”
  • Seven-year-old's fundraising is wheeley good

    by User Not Found | Jun 20, 2016
    A seven-year-old boy raised over £400 in a duathlon organised by his dad.

    Jack Santer, from Whitstable, cycled and ran 11.8k as part of the route which took in the Promenade in Herne Bay and Reculver.

    It wasn’t part of an organised event, just a route his dad Trevor devised. Jack raised £440 for Demelza Hospice Care for Children.

    Trevor said: "The reason we chose Demelza was to raise money for less fortunate children local to us and to try and make a difference. Jack realises how fortunate he is and now appreciates this more than ever after getting a taste for the fantastic work done by the charity."
  • Star wars actor makes dreams come true for Demelza children

    by Tessa Paton | Jun 14, 2016
    Star Wars actor John Boyega brought smiles to seriously ill children when he visited Demelza, his local children’s hospice.

    The Bafta-winning star from Peckham, who plays Finn in the popular film franchise, spent time with families cared for Demelza Hospice Care for Children on Monday 13 June.

    John, 24, who appeared alongside Harrison Ford in The Force Awakens, visited our Eltham hospice Demelza SEL, where children up to the age of 19 come for respite, symptom management and end of life care.

    Mr Boyega “couldn’t wait” to make dreams come true for children like seven-year-old Lamin, also from Peckham, who has endured over 20 operations in his short life and has a tracheostomy to help him breath. 

    After being treated to a special Star Wars party in his honour, John said: “I’d heard about the great work of Demelza so couldn’t wait to visit and help make some dreams come true. I was blown away by the children and the nurses who do such a fantastic job of caring for them. 

    “South East London is extremely fortunate to have such an amazing charity on its doorstep, ensuring families get the support they need. I just hope people will continue to do what they can to support this great cause.”

    Many of the children dressed as Star Wars characters for the occasion including four-year-old ‘stormtrooper’ Eshan, who has a rare form of rickets, and his sister Mysha, six, who came as Rey. 

    Their mum Shara from Hither Green said: “I don’t think I’ve ever seen Eshan so excited -it’s made his day. It’s been a very tough year so to see him so happy is absolutely wonderful.

    "The support we’ve had from Demelza has been life-changing and days like today make our time here even more special.”

    A smile also beamed from eight-year-old Nicholas from Sidcup who has Duchenne muscular dystrophy, a severe muscle-wasting condition.

    His mum Abigail Smith said: “This was our first visit to Demelza so I didn’t know what to expect but it’s been wonderful. Finn is Nicholas’ favourite character in the new Star Wars film and you could see how just happy he was to meet him.”

    As a charity, not part of the NHS, Demelza is reliant on community generosity to be able to continue providing care to hundreds of families across South East London, Kent and East Sussex who desperately need support.

    Care Coordinator Fiona Ashmore said: “We’re so grateful to John for taking time out of his busy schedule to visit Demelza. He interacted beautifully with the children and families, playing games, cracking jokes and most importantly raising so many smiles.

    “The work we do can be very sad at times but most of the time this is what it’s all about – making precious, happy and memorable moments, for the families we care for.”
  • Photographer works with children to create unique artwork

    by User Not Found | Jun 13, 2016
    An international photographer has been working with children at Demelza to create a unique piece of art for the reception area.

    Jan von Holleben spent three days photographing babies and young people at Demelza Kent in Sittingbourne.

    Over 20 children aged from eight months to 17 years took part in the project. Each young person chose something they would like to be from a dragon to superman or a policeman.

    The finished artwork entailed Playground Paradise shows the children with a superimposed addition such as wings or a platform of some sort.

    Demelza Art Therapist Josie Mahoney said: “This represents our motto `it’s about life’. It’s about children being free, away from their wheelchairs. The image shows them having fun and enjoying life.

    “It gives families the opportunity to have photographs they would not normally have. And for our children who are disabled a chance to engage in an activity they wouldn’t normally do.”
  • Runners take on 5k or 10k for #TeamDemelza

    by User Not Found | Jun 13, 2016
    Nearly three hundred supporters braved the rain to take part in the Demelza Run on Sunday (12 June).

    Two hundred and seventy two runners took part in the 2.5k, 5k or 10k course which was held for the first time in the grounds of Groombridge Place near Tunbridge Wells.

    The charity’s mascot, Dotty was there to spur competitors on and to pose for selfies and drum band Bloco fogo entertained the runners and supporters before the race.

    The 10k race was started by Demelza child Millie De’ Vere who also won the 2.5k wheelchair accessible award.

    The winner of the 10k race was Aaron Wright who finished in a time of 43 minutes 25 seconds with Mark Weller coming second.

    Sally Norris was the first female over the finish line.

    The 5k race was won by Simon Parrin in a time of 19 minutes and 42 seconds and Leigh Mitchell came second.

    Karen Ponte was the first female over the line and Daniel Rowe was the fastest under 16 runner.

    The prize for the best costume went to Jane Lowe, part of the Kent Police training school team, who ran the 10k dressed as a smurf.

    Gemma Murray, Demelza's Events Coordinator, said: “A special thank you to Groombridge Place for hosting the Demelza Run for the first time this year.

    “Thank you so much to everyone who braved the damp conditions to take on the challenging course at Groombridge in the name of #TeamDemelza We hope to see you again next year as your support really does help us care for those who may not live a long life to live a full life.”

    Click here to see pictures from the run.
  • Right royal occasion at Eastbourne Carnival

    by User Not Found | Jun 13, 2016
    The Demelza Community team got glammed up for their entry in this year's Eastbourne Carnival.

    The Demelza float had a vintage tea party theme to mark the Queen's birthday, decorated with cards made by children helped by the hospice at home care service as well as a balloon model of the charity's mascot made by Over the Moon party shop in Pevensey Bay.
  • Bubble Rush is fun for all the family

    by User Not Found | Jun 06, 2016
    Runners will be able to take part in an event with a difference next month – exercising while going through coloured foam.

    Demelza is holding a Bubble Rush fun run at Preston Park in Brighton on Saturday 9 July from 11am to 3pm.

    Participants will get the chance to run through walls of 4ft bubbles along the route which is child friendly.

    There will be live entertainment throughout the day and everyone taking part will receive a t-shirt, medal and goody bag.

    Entry costs £25 for adults and £7.50 for children and can be booked by clicking here or by calling 01795 845191.

    Raise £100 (per person) by the day of the event online and you can even claim back your registration fee.

    Events Manager Emma Middleton said: “Last year we were the first charity in the south east to hold a Bubble Rush fun run and it was so popular we are delighted to be doing it all over again. The event sums up the ethos of Demelza – fun, laughter and making memories.”

  • Crafty card making for Royal Carnival entry

    by User Not Found | Jun 03, 2016
    Children who are supported by Demelza have been getting creative as part of the charity’s entry into this year’s Eastbourne Sunshine Carnival.

    The charity has chosen a vintage tea party theme for their float and held a craft day to help decorate it.

    Five children aged six to 13 took part in the craft day on Tuesday (31 May) at Hailsham East Children’s Centre making birthday cards to celebrate the Queen’s 90th birthday.

    A music session was also organised by Belltree Music Therapy Centre and there was a photobooth, sensory play and lots of cake.

    The Eastbourne Sunshine Carnival will take place on the Seafront on Saturday 11 June. More than 1,500 walkers are expected to take part with some 25,000 fans and supporters there to cheer them on.
  • With great power comes great responsibility

    by Tessa Paton | May 31, 2016

    I’ve been spending a lot of time in the Marvel Universe lately. I say ‘I’ve been spending a lot of time in the Marvel Universe’ – what I mean by that is I’ve been watching lots of crap telly about superheroes when I should be going to bed. I’m a little bit addicted.

    I think the reason superheroes and their ‘universes’ are so addictive is because they’re so simple. A difficult superhero dilemma is usually something like: I’ve only got time to do one thing, so should I save the lives of lots of people, or save the person I love?  (Supervillains love that one). Or sometimes you might get wrongly accused of throwing a bus full of nuns off a bridge or something, and everyone hates you and you get a bit petulant about it. On the face of it those things sound quite tricksy, but they aren’t actually all that difficult to deal with, especially as you usually manage to get out of it with your superpowers. 

    If you were a superhero you wouldn’t have to bother so much with the more tedious, and genuinely difficult, things in life, like how to best support your family through hard times when the answer is more complicated than just beating a mutant cyborg in a fight. And if you’re a superhero, you don’t have health problems or disabilities. The superhero I’m addicted to at the minute is blind, but it doesn’t matter because his other senses are so supersensy that he can still easily kill all the baddies.

    I recently saw some astonishingly lyrical writing by a child who uses Demelza services, in which he talked about himself as a mighty, invincible superhero. And in our art therapy and art activities sessions, superheroes are a common theme. Children often identify with superheroes – they are a way they can imagine being more powerful than the people and things around them, to exert some control where they feel they have relatively little. And they are a way to visualise overcoming problems and fears – by fighting them head on with laser eyes and ninja stars.

    The children who use our services do overcome the greatest obstacles, and they beat into submission the biggest possible fears you can imagine. Their family members have to fight alongside them in a team, like in The Avengers. That’s a huge responsibility, and one they never asked for. They are superheroes.

    Back in the Marvel Universe, Spiderman’s kindly Uncle Ben once said that with great power comes great responsibility. I wouldn’t know, but I do know that sometimes people get given the greatest responsibilities and no extra power. To manage those responsibilities without super-strength, just with normal-strength, is truly extraordinary.

  • Royal approval for Demelza's carnival entry

    by User Not Found | May 27, 2016
    Demelza Hospice Care for Children’s entry in Eastbourne Carnival has attracted the interest of The Queen.

    The charity’s entry in the carnival will have a vintage tea party theme to mark the Queen’s 90th birthday. Support Worker Katie Wilmshurst decided to let the Palace know about it and was delighted to receive a letter back from Susan Hussey, her Lady in Waiting.

    It said: “The Queen was deeply moved to know of the support and care your team are able to offer to families in Sussex and of your activities to raise funds to enable this work to continue. Her Majesty was interested to hear you are to take part in the Sunshine Carnival in Eastbourne and that your float is to take the theme of a tea party to celebrate the Queen’s birthday.”

    Toni Finnimore, Community Services Manager said:" The team have worked extremely hard on this year's entry and the amount of local support has been overwhelming so to have had acknowledgement from the Palace really is the icing on the cake. Thank you to all that have offered help, we look forward to seeing you on the day"

    As well as a vintage tea party theme the front of the float will feature the logo of the charity, which provides hospice at home specialist care for children across East Sussex, in balloon form.

    This is thanks to Daina Martin, who runs Over the Moon party shop in Pevensey Bay, who estimates it will take around 100 balloons to make the 6ft red and white model of a clown doing a handstand.

    Daina admitted: “It is certainly the most challenging thing I have made because it’s angled.”

    Demelza Community support worker Chelsea Spence, a former Eastbourne Carnival Queen, who is leading the charity’s entry said: “Thank you so much to Daina and everyone at Over the Moon for their support. This will really make us stand out. It really captures Demelza and everyone will know it is us.”

    The Eastbourne Sunshine Carnival will take place on the Seafront on Saturday 11 June. More than 1,500 walkers are expected to take part with some 25,000 fans and supporters there to cheer them on.
  • Walk this Way 50k for #TeamDemelza

    by User Not Found | May 27, 2016
    Supporters of a children’s charity took on an epic 50k challenge.

    Walkers trekked between Demelza Hospice Care for Children’s hospices in Rook Lane, Bobbing and its facility in Wensley Close, Eltham or vice versa on Saturday (21 May.)

    Seventy six people took part in the second event of its kind, taking between 9 hours and 12 and a half hours to complete the route. Walkers ranged in age from 15 to 73 years old, with someone even celebrating their 50th birthday on the day.

    John Bull did the walk along with three friends in memory of his friend Mandy Coppen who took part in the event last year.

    John and his friends battled blisters to complete the walk in around 11 hours and have raised over £1,000.

    John, from Sidcup, said: “I don’t know how we done it but we did. It was hard. But it was really worthwhile doing.”

    Events Manager Emma Middleton said: “Well done to all of our amazing walkers who completed the equivalent of an ultra marathon for #TeamDemelza. Thanks also to everyone who made the walk possible including the fantastic Twin Restaurants who sponsored the event and loaned the use of their restaurants in Gravesend, Dartford and Bexleyheath for water stops. Watch this space for details of next year’s walk!”
  • Book your free furniture collection

    by Tessa Paton | May 26, 2016
    Is your sofa, wardrobe, coffee table or bed in need of a new home?

    We're looking for donations of furniture for our Gillingham and Rainham furniture shops.

    All items sold will fund care for seriously ill babies, children and young people and their families.

    Shops Operations Manager Rachel Stead, said: “Our free collection service is a great for people looking for a hassle-free way of passing on furniture they no longer want or need. They can also feel happy knowing that once their item is sold in our furniture shops, it will help to fund care for seriously ill children in their local community.

    "If you are a UK Tax Payer, Demelza can claim Gift Aid on the proceeds from the sale of your donated items, helping us generate additional income at no extra cost to you.”

    Find out more about what items can/cannot be donated and for free and speedy collection (in selected Kent postcodes) please call 01634 574 496.
  • Children's Hospice Week: Time to put families first

    by Tessa Paton | May 25, 2016
    This Children’s Hospice Week (23 to 29 May) we're highlighting what it's like for families caring for seriously ill children and how Demelza's support can make time to put families first.

    However, we can't do this without you, and that's why we are asking for your help today, with a donation.

    Rhys, Hallie, and Isabelle receive care from Demelza and we’re extremely grateful to their families for sharing their stories this Children’s Hospice Week.

    Our thanks extend to every single one of our amazing supporters, volunteers, suppliers and friends who give so generously and make our care possible. Members of staff with be calling and emailing a selection of these marvellous people throughout the week to personally show their gratitude.

    Keep up-to-date with all our Children’s Hospice Week plans and share what you’ve been up to on our Facebook and Twitter.





  • Join us for Demelza Run at Groombridge Place

    by User Not Found | May 17, 2016

    Nearly 200 people have signed up to take part in this year’s Demelza Run. The annual event, which this year is in a new location in the grounds of the award-winning Groombridge Place near Tunbridge Wells, takes place on Sunday 12 June.

    There are 5k and 10k options as well as a 2.5k wheelchair accessible route.

    The run will be started by Millie DeVere who comes to Demelza for respite. She and her family will also be taking part in the 2.5k run.

    Her mum Samantha said: “As a family we took part in the Demelza Run last year and can’t wait to do so again this year. Demelza have looked after my daughter Millie for over three years now, so we take part in the run as a way to give back and say thank you for the amazing work they do. Millie’s really excited to start the race again as she loves big crowds and loud noises.”

    Entry costs £15 for adults, £7.50 for children and £40 for a family and includes free entry into Groombridge Place after the event. Family and friends can also get 25% off on the day too if they want to enter the main grounds.

    There are competitions for schools and running clubs which take part.

    Sign up here.

  • International Nurses Day: A chance to celebrate our amazing care staff

    by User Not Found | May 12, 2016
    Today (12 May) is International Nurses Day – an annual day marked around the world on the anniversary of Florence Nightingale's birth.

    At Demelza on International Nurses Day we recognise our truly incredible care team and thank them for providing expert and compassionate care for Demelza children, young people and their families.

    Danni Kerin, Palliative Care Nurse at Demelza Kent in Sittingbourne, explains why she loves working at Demelza.

    She said: “Before coming to Demelza I worked on a hospital children’s ward for 15 years. I loved working with children but I got frustrated at not having time to spend with the families. It’s totally different here. Palliative care is about focusing on quality of life, for the child and the entire family.

    “But whatever I am doing, there is always time to listen. I took this job because I wanted the chance to use the skills I gained doing a foundation course in counselling as well as my nursing skills.

    “Of course sometimes that means supporting families through the loss of their child. That’s not something you get used to, but at least if you have built up a relationship you have the comfort of knowing you have helped make it as positive an experience as possible, building up memories and giving them time to concentrate on their child and let us take care of everything else.”

    Melissa Day joined Demelza as a Palliative Care Nurse seven years ago when we opened Demelza SEL in Eltham.

    She said: "The thing that attracted me to children’s palliative care was the opportunity to provide one-to-one quality care with seriously ill children and their families. I am very lucky to be able to work at Demelza and help to create precious memories, especially when time is short.

    "There is something very special about learning how to communicate with non-verbal children and I find it so fulfilling seeing children in our care respond so positively to music and art therapy. There is nothing better.”
  • Grateful new mum to run half marathon for Demelza

    by User Not Found | May 11, 2016

    A Lewes writer is in training for her first half marathon, in aid of Demelza, motivated by the traumatic birth of her daughter.

    Jen Rouse faced a parent’s worst nightmare when complications arose during her delivery – but thankfully everything turned out fine.

    “Since my daughter Juniper's birth nearly a year ago I've thought a lot about what might have been,” said Jen. “Juniper got stuck at the last minute and wasn't breathing when she was born, but some amazing midwives and doctors helped give us the best possible outcome. The alternative doesn't really bear thinking about.”

    In gratitude for her happy outcome, the new mum signed up for the New Forest Half Marathon on 11 September, and is raising funds for Demelza Community's hospice at home service for families across East Sussex.

    “I've chosen to run for Demelza to support families and children who need all the love and comfort and fun and silliness and kindness we can offer,” she added.

    Julie Brett, Demelza’s Community Fundraiser for East Sussex, said: “It’s wonderful that Jen has been motivated to help other less fortunate families, and juggle being a new mum with training for her first half marathon. Her hard work will help us support more people across the county who are coping with the pressures of caring for a seriously ill child.”

    Having already smashed her £500 target, Jen is now aiming to raise £1,000. You can support Demelza by sponsoring Jen or taking part in your own challenge or event.

  • Businesses receive awards for charity support

    by User Not Found | May 09, 2016
    Companies were rewarded for their charity support at the Demelza Business Awards on Friday (6 May).

    The annual event is a chance for Demelza to thank its corporate supporters for their fundraising and was supported by Natwest.

    Demelza parent Lawrence Cullinane spoke about his experience of the charity at the event at the Dartford Hilton.

    Kings Hill based Kimberley Clark won the Outstanding Voluntary Project award for their work in the garden at Demelza Kent in Sittingbourne. The team planted, painted, created an outdoor sensory wall and generally transformed the outside area to make it a more useable, friendly space.

    The Outstanding Corporate Supporter award went to NatWest Commercial which has offices in Bromley, Croydon, Canterbury, Dartford and Maidstone. The company set a challenge to raise £100,000 for Demelza across five regional teams. From skydives to marathons and bike rides to fundraising events with customers, with sheer determination, hard work and dedication this company achieved this formidable target.

    Medway based Multifire have saved Demelza over £6,000 a year by providing
    planned preventative fire alarm maintenance to our Kent and Eltham hospices at no cost.

    Recently, this company went one step further and replaced all of the 259 fire alarm field devices at Sittingbourne, an estimated cost saving of £10,000. This generosity earned Multifire the Corporate Gift in Kind award.

    Natalie Vooght from East London based Markit won Staff Fundraiser of the Year

    Natalie took on a huge challenge along with a colleague and walked the 50km between our two hospices in Sittingbourne and Eltham in under 10 hours. She smashed her £500 fundraising target, devoting hours to fundraising and training over the six months before the walk to raise thousands. Alongside this she organised colleagues to volunteer across both hospices and asked her employer to donate goods to be used at events for both the children and as goody bag prizes.

    Fundraising Team of the Year went to Berkeley Homes (based in Kidbrooke and Woolwich Arsenal).

    Berkeley Homes has supported Demelza for a number of years and have raised over £250,000 to date through their annual football tournament, taking part in lots of sporting challenges and from staff signing up to payroll giving. They have taken part in events such as climbing Ben Nevis, the 2015 Prudential Ride London, the 2016 London Marathon and most recently a team of four cycled from our hospice in Sittingbourne to Amsterdam. It’s almost impossible to single out one person from this amazing team but special mention must be made for Andy Wallis who has completed four challenges and Andy Carson who has completed three.

    Vauxhall-based Axis Europe won Outstanding Long-term Supporter.

    Axis Europe have been working with Demelza since 2004 and have raised almost half a million pounds. From an annual ball and volunteering days to lots of staff fundraising for our Go Dotty campaign week, they have made an incredible impact to Demelza as we’ve grown and expanded over the last 12 years.

    Charlotte Jones, New Business and Accounts Executive at Demelza said: “The Business Awards gives us a great opportunity to personally thank our amazing corporate supporters for giving so much time both in terms of fundraising and volunteering. This support makes a huge difference to the services we provide to families across the South East.”

    To see more pictures from the night click here to view our gallery
  • Eleven-year-old cycles for charity which supports his family

    by User Not Found | May 06, 2016
    An eleven-year-old boy whose brother has support from Demelza has done a bike ride to raise money for the charity.

    Louie Houghton from Orpington raised over £500 with the 17.5k cycle ride at Gravesend cyclopark.

    Louie said: “There were these other people in my class doing something for charity so I suggested to my friends we should do something. Five people from my school did it.”

    “I was only supposed to do 10k but I ended up doing 17.5k.”

    “I wanted to do it for Demelza because they had helped me so I thought I should help them back.

    “It’s a good place to stay when you need help.”

    His brother Danny, 15, has Quadriplegic cerebral palsy and can’t do anything unaided.

    Danny can sometimes have seizures at night so the whole family mum Kerry, dad Darren, Louie, Danny and younger brother Jody all come to Demelza Kent in Sittingbourne for a break.

    Louie explains what Demelza means to him: “It’s fun. I’ve made lots of friends and they know what it’s like because they are in the same situation.”

    “You don’t get bored. I play on the Xbox, we watch movies.

    “I’ve also been on a climbing trip.

    “Danny can relax at Demelza. He likes the swimming pool quite a lot. Sometimes we just go there to go swimming.”

    Mum Kerry adds: “It’s the only chance we can go swimming as a family now Danny’s bigger. It’s changing him that’s the problem.”

    “It’s nice to have a break even just to have a break from measuring out the medicines. When we go out for the day to not have to worry about things. I have the best sleep when we stay at Demelza.

    “We all go as a family and use it as a base to go out for the day.
    “It was nothing like I imagined. I didn’t realise it was used for respite. It’s such a happy environment. It’s just nice to have that back up.”

  • Congratulations to Demelza 101 victors

    by User Not Found | May 03, 2016

    Their knees were sore, their tyres were flat – but the magnificent Demelza 101 cyclists who rode into Amsterdam on Saturday were on top of the world.

    Four days and 350 miles after setting out from Demelza Kent in Sittingbourne, the riders arrived in the city’s Museum Square to a rapturous welcome from their families and Demelza representatives including CEO Ryan Campbell.

    There they heard the news that together they have raised an incredible £200,000 towards Demelza’s work with life-limited and life-threatened children and their families.

    “We are so proud of every one of the Demelza 101 riders, and amazed by how much they have raised, which will make an enormous difference to the care and support we give,” said Event Coordinator Emma Austen.

    “It’s a big ask of people to take on such a tough challenge, and we are hugely grateful that so many were willing to step up to be 100 riders with one cause.”

    Before heading back home – where they had another welcome reception at Ebbsfleet International station – some of the cyclists shared their feelings about the experience.

    “A brilliant challenge – who knew cycling on the flat could be so difficult!” said Claire Stone, while Karen White claimed: “I loved every minute!”

    Stephen Gallagher summed up what Demelza 101 is all about: “Unbelievable cause. Fantastic people. A once in a lifetime experience.”

    See our photo gallery for highlights of the event.

    Feeling inspired to take on Demelza 101 yourself? In 2017 we will be in the Lake District and are looking for people to sign up for a trek or triathlon. Find out more.