• 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, and our Shopping Outlet at Maidstone.

    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.
  • Countdown to Demelza Business Awards

    by User Not Found | Apr 29, 2016
    The countdown has begun... this time next week we will be celebrating the amazing support of our corporates at our annual Business Awards at the Hilton Dartford Bridge.

    We will be announcing the winners in the following categories at the black tie do:

    Staff fundraiser of the year
    Fundraising team of the year
    Outstanding voluntary project
    Outstanding long term supporter
    Outstanding corporate supporter
    Corporate Gift in Kind

    A big thanks to NatWest for making this event possible by sponsoring it and congratulations to all the nominees - you are all winners because of the fundraising you do for ‪#‎TeamDemelza

  • Demelza shortlisted for digital award

    by User Not Found | Apr 28, 2016
    The Demelza website has been shortlisted for a Kent Digital Award.

    The site, which launched in January, is now easier to navigate, has a strong focus on imagery to capture the essence of the hospice as a positive place and of `life’ and is fully mobile optimised.

    Head of Marketing and Communications Tessa Paton explained the thinking behind the site:

    “Our primary aim was to create a user friendly site and to let emotive images of our care do the talking – with less text, better use of photos throughout and an inspiring new video at the top of the homepage.

    “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.”

    Demelza Volunteer and IT expert Simon Asselman was heavily involved in the planning and development of the new site.

    He said: “Late in 2014, I joined the marketing team to help maintain and optimise their current web site which, truth be told, was rather rudimental in appearance and somewhat cumbersome to navigate. The design was unresponsive and didn’t reflect the personality of the charity or the experiences that it offered to the community. So we sent out an invite to tender and selected new digital partners to help build a new platform that would more prominently showcase the stories of both our wonderful families and supporters.

    “Now in 2016, our new website is fresh and full of vibrancy and inspiration. The stigma associated with hospice care is blown away by intimate photos and videos that illustrate the precious moments and happy memories families have created using Demelza services.

    “The site map has been simplified and the content has been personalised - both of which ensure help is uncomplicated and quick to access. We are only at the start of our digital transformation journey but I’m extremely proud to have been involved in the creative process so far and to continue to be part of such a fabulous organisation.”

    Demelza will find out on 23 June whether it is a winner in the Website: School, Education or Charity category at the ceremony at Brands Hatch Motorsport Vision Centre in Longfield.

  • Demelza 101ers get on their bikes

    by User Not Found | Apr 27, 2016
    One hundred riders. One cause. Months of training and fundraising are over and the Demelza 101 challenge is underway.

    On a sunny but undeniably crisp morning, the hardy bunch of cyclists – long distance veterans and nervous first-timers both – gathered together at Demelza Kent in Sittingbourne, ready for the start of their 350-mile, four-day ride to Amsterdam.

    CEO Ryan Campbell, speaking on behalf of all Demelza families, staff and volunteers, thanked everyone for their amazing dedication, and exhorted them to “ride like the wind!”.

    Before setting off on the first day’s 70-mile leg to Dover, cheered on by Demelza and family supporters, some of the cyclists explained why they were taking on the challenge. See what they had to say in our video.

    To keep up with the cyclists throughout the ride, follow them on Facebook.

    • If you are inspired to join #TeamDemelza, check out the next Demelza 101 challenge.
  • Make your dog the star of the show

    by User Not Found | Apr 26, 2016
    Demelza Hospice Care for Children’s dog show, Pooches on the Prom, is returning to Folkestone on Saturday 28 May.

    The fun-filled event is a chance to show off your pet’s good looks and talent while raising funds for Demelza’s work supporting seriously ill babies, children and young people from across Kent, East Sussex and South East London.

    Families are invited to take their pooch for a bracing stroll along The Leas in Folkestone at 11am before taking part in the dog show. Held in partnership with Folkestone Festivals, there will also be a mini funfair, tombola and refreshments.

    Leila Ilkhan, Community Fundraiser for Demelza, said: “We can’t wait to welcome local dog owners and their pooches to this event again this year so they can show off their dog’s talents to the town. All funds raised on the day will help Demelza support children with life-limiting and life-threatening conditions and their families.”

    Entry per class is £2 and it is £5 to join the walk. To register your interest please call 01795 845288 or email leila.ilkhan@demelza.org.uk.
  • Support Will Writing Week

    by User Not Found | Apr 22, 2016
    Solicitors across Kent are giving up their time for free in support of Demelza Hospice Care for Children’s Will Writing week.

    The charity initiative, which this year runs from May 23 to 27, offers people the chance to have a new Will written or an existing Will updated in return for a donation to Demelza.

    This year the week is part of Children’s Hospice Week - the UK's only awareness and fundraising week for children with life-shortening conditions and their families and the palliative care services that support them.

    Whitehead Monckton which has offices in Canterbury, Maidstone and Tenderten, Hawkridge & Co which has an office in Gillingham and Thackray Williams whose offices are in Bromley, are among those giving up their time for free to make this possible.

    Supporter, Rebecca Harvey has said why she decided to be part of Demelza’s Will Writing campaign: “We have two little girls and we’ve recently moved house, so my husband and I decided we needed a Will to put things in place, should the unforeseen happen. We saw Demelza’s advert and thought we would both like to support our favourite charity and have the Will done in the process. We can now forget about it and enjoy our little family!”

    For more information about Will Writing Week or to get involved please contact Lisa Clark, Trusts, Legacies and In-Memory Fundraiser on 01795 845275 or lisa.clark@demelza.org.uk
  • Help us see off Demelza 101 riders in style

    by User Not Found | Apr 20, 2016
    Photo caption: celebrations in Paris at the end of the last Demelza 101

    It’s only one week to go until Demelza 101! Our 100 cyclists have spent months training for the 350 mile ride from Sittingbourne to Amsterdam and fundraising for Demelza Hospice Care for Children – with the total already reaching an incredible £160,000.

    “We want to give the Demelza 101 team the best possible send-off when they get on their bikes on 27 April, and are calling on families, friends, and Demelza supporters to join us at the hospice and along the first day’s route to cheer them on,” said Event Coordinator Emma Austen.

    “By signing up to this challenge, they are making an amazing contribution to the care and support we give to seriously ill children and their families in East Sussex, Kent, and South East London.”

    The cyclists will be leaving Demelza Kent in Rook Lane, Bobbing at 8.30am next Wednesday for the 65-mile ride to Dover. Supporters need to be there by 8am at the latest.

    Staff and volunteers at our High Street Whitstable shop will be encouraging shoppers to wave a flag and cheer the riders on as they pass by from around 9-10.30am.

    The team will be stopping for a well-earned lunch at the Kingsdown Road car park in Deal from around 12.30-2.30pm – and then supporters can see them off on the rest of their adventure, via Dover, Calais, Bruges and Breda, all the way to Amsterdam.

    To keep up with the cyclists throughout the ride, follow them on Facebook.

    Please note: routes are subject to change and we cannot guarantee you will see a specific rider.
  • Runners take on Brighton Marathon for Demelza

    by User Not Found | Apr 19, 2016

    Nearly 30 runners took on 26.2 miles in aid of #TeamDemelza on Sunday.

    The CEO of Demelza Hospice Care for Children Ryan Campbell (pictured) was among the runners taking part in Brighton Marathon with the charity one of the partners of the event.

    He completed the marathon in 4 hours 18 minutes.

    He said: “It was sunny and hot - not necessarily the best running weather but the coast looked beautiful and the spectators were out in force. I saw most of our runners - as they passed me!

    "The feeling of being part of a charity community, not just Demelza but all the children's hospices and other causes represented, really picked up your legs in the long home straight back from Hove.”

    Ben Smith, whose family was helped by Demelza, ran Brighton Marathon and is doing London Marathon next week as well.

    He has a very personal reason for wanting to take part as Demelza provided respite and end of life care for his sister-in-law, Catriona.

    Catriona was born with an immune deficiency. She was in and out of hospital during her life but came to Demelza’s hospice in Eltham, South East London for some treatments.

    Ben said: “We spent time there as a family. It was a nice environment. It didn’t feel medical."

    And he explained how important Demelza was to the family when the 13-year-old passed away.

    “It gave all the family comfort that the facility provided an environment to say goodbye to Catriona.”

    Catriona died on 3 March 2012 and Ben has been spurred on to fundraise for Demelza since then.

  • Kent FA appeal highlights importance of play

    by User Not Found | Apr 15, 2016

    A family using Demelza is urging people to get behind the charity’s joint appeal with Kent FA to refurbish its sensory soft play room. Hallie, five, has osteopetrosis, a rare genetic condition which means she is blind and has brittle bones. She and her eight-year-old brother Logan really enjoy the chance to play together at Demelza Kent, our hospice in Bobbing, Sittingbourne.

    “Hallie loves the soft play room, especially the ball pit and the interactive music kit,” said dad Ian Robb.

    Mum Megan Janes added: “We can’t really relax if we take them to a public play centre because we can’t let Hallie go off in case the other children knock into her. At Demelza she knows her way around the soft play room and she can have her freedom.”

    The Kent FA appeal needs schools, youth and adult football teams, and businesses throughout the county to sign up and take part in some champion fundraising activities related to the beautiful game – with prizes for those that make it to the top of the league.

    As well as refurbishing the soft play room, the appeal aims to fund a
    team of nurses to provide around the clock care to children and young people with life-limiting and life-threatening conditions.

    The importance of making play facilities accessible to children with complex needs is highlighted in a report by Sense, the charity for deafblind and sensory impaired people.

    Following a public inquiry into the provision of play services for children with multiple needs, the report concluded that lack of access means they miss out not only on having fun but on emotional, social and physical development.

    Demelza’s Director of Care, Beth Ward, said: “A lot of the work we do at Demelza is about giving the children in our care the chance to live a full life – and that means being able to have fun like any other child.

    “For them, the soft play room is somewhere to have a great time, but for their families and our care team it’s also an important therapeutic resource. That’s why we are so grateful to Kent FA for supporting its refurbishment.”

    Check out the Kent FA Appeal fundraising packs and fun resources to help get you started by clicking here

  • Demelza marathon challenger ready to run with celebrities

    by Tessa Paton | Apr 13, 2016
    A Demelza fundraiser will be seeing stars when he takes part in the Virgin Money London Marathon this month.

    Father-of-two Ged Longworth will be surrounded by celebrities as he embarks on the epic 26.2mile race on Sunday 24 April.  

    The 33-year-old from Days Lane, Sidcup is the lucky winner of one of eight upgrades to the star-studded Green Start.

    Ged will be hoping to capture selfies with the likes of Kent Olympian Dame Kelly Holmes MBE and Radio 2 Presenter Chris Evans, who is a familiar face at Demelza.

    The Green Start is the smallest place to begin the race so once the gun fires, Ged is hoping to be over the line in a flash.

    The second-time marathon runner is also looking forward to wearing his Demelza vest with pride and is aiming for a super-speedy time of under three hours 40 minutes.

    Ged said: “It means a lot to me to be able to run for Demelza, my local children’s hospice. I’m determined to raise £2,500 because the money will help to fund vital care for seriously ill children and their families. It was hard to believe I’d won the upgrade because there are so many people taking part but it’s a nice feeling knowing I will be able to get running a lot quicker and hopefully achieve my target time.”

    Ged is one of 65 #TeamDemelza runners who will be taking part in the Brighton and London Marathon this month.  

    You can support Demelza by sponsoring Ged or by taking part in your own challenge or event.