A little boy who was diagnosed with a brain tumour at only 12 days old was first to switch on the Christmas lights at Edinburgh’s new children’s hospital.
Joey Sharp, now 11 months old, endured two life-saving surgeries just days after he was born at Christmas time last year, and has been undergoing chemotherapy treatment at the hospital ever since.
Alongside his proud parents and with the help of big sister Carly (3), Joey pressed the button to light up the 20ft tree and surrounding area, following an introduction and countdown from Forth One presenter Boogie in the Morning.
Mum Sam said: “Our little Joey was only 12 days old when he had emergency surgery in December last year. Hours before, we were given the devastating news that he had a brain tumour.
“We were told to prepare for the worst. Our world had shattered. I had been making Christmas lists, buying presents and organising family fun. Suddenly, it all seemed hopeless.
“After eight agonising hours, 50% of the tumour was removed. But Joey was still seriously ill and needed a second operation. The days passed in a blur as we sat by his side in Intensive Care.
“Two days before Christmas, he had his second brain surgery. This time, they removed 98% of the tumour, but we still had a way to go. With six long months of intensive chemotherapy ahead, we were determined to make the most of every moment.”
Sam and husband Steven will always be grateful for all the care and support both they, Joey and Carly received while in hospital over the festive period.
The family are backing Edinburgh Children’s Hospital Charity’s (ECHC) new Christmas appeal, which asks supporters to help “Light Up Christmas” for those seriously ill children and young people facing a hospital stay this December.
Sam continued: “Throughout our time in hospital, ECHC was there for us at every turn, supporting us on the ward when none of our family or friends could visit.
“The charity’s activities gave us a break from our daily reality. Seeing Joey respond to bubbles in baby sensory sessions, and hearing singing and live music was wonderful. It gave us hope. The change that came over the ward when the charity arrived was amazing, everyone’s faces lit up.
“On Christmas Day, Covid rules were relaxed and we were allowed to be together. ECHC made sure our time was magical. They showered the kids with gifts and involved Carly in all the fun. The best gift of all was seeing her and her baby brother together for the first time since he was admitted.
“In March, we were transferred to the new Royal Hospital for Children and Young People. We felt anxious leaving the old Sick Kids but the moment we arrived we were reassured with the most wonderful welcome.
“The new hospital is made for children and families. It’s a bright, fun, friendly space that supporters of the charity should be proud to have made possible.
“Joey is now 11 months old, cancer free and growing stronger every day. Without doubt, the support from ECHC made a huge difference to his recovery and our first memories as a family so it was wonderful to have him be the first to switch on the Christmas lights for the charity at the new hospital!”
Children, families and staff gathered at the hospital entrance and watching on from windows were treated to a musical performance by Edinburgh Brass Band before watching Joey and his family light up the giant Christmas tree – very kindly gifted to ECHC by Conifox Adventure Park.
The Christmas Light Switch On is just one of many activities that the charity has planned to make Christmas as magical as possible for those who are sadly too unwell to spend it at home.
Victoria Buchanan, from ECHC, said: “We would like to say an enormous thank you to Conifox Adventure Park, Edinburgh Brass Band, Boogie in the Morning and Joey and his family for helping to make our first ever Christmas Light Switch On at the new hospital so special.
“Every year, ECHC makes Christmas magical for children in hospital by creating a living advent calendar around the wards with a new surprise behind each door, with everything from a real ballerina to festive magic sessions and a samba band! We also fund the hospital play team and Christmas gifts to make sure treats and distractions are always available to bring smiles and comfort.
“This is our first year in our new home at Little France, so we are determined to make it the biggest and best Christmas yet. Although we have lit up the building, we still need help to Light Up Christmas and make sure no child or young person in hospital misses out on the joy of the festive season.
“We rely solely on donations to do this. Please help by making a donation to ECHC this Christmas. You could Light Up Christmas for a child in hospital this December.”
To donate now to ECHC’s Light Up Christmas appeal, visit:
Congratulations to Edinburgh Children’s Hospital Charity (ECHC), who received not one but TWO top awards at last night’s SCVO Scottish Charity Awards event!
The charity explained on Facebook: ‘Something pretty AMAZING happened tonight … ECHC won the PEOPLE’S CHOICE AWARD at SCVO Scottish Charity Awards 2021!
‘And then, just as we were gathering our thoughts and getting our emotions in check … we were announced as WINNERS of CHARITY OF THE YEAR too!
‘This is truly incredible. THANK YOU to everyone who voted for us and to our wonderful supporters, partners, volunteers and staff for your dedication in helping children and families in hospital.
‘This past year has been one of the toughest and we could not have done it without you all. So, this one’s for you…THANK YOU! ‘
ECHC’s Victoria Buchanan said: “We are absolutely thrilled to be named Charity of the Year and People’s Choice winner at the Scottish Charity Awards 2021! Through the tightest Covid restrictions and a hospital move; ECHC was privileged to stand alongside those ill, injured and shielding at home.
” From emergency care packs, silent discos, giant inflatable octopuses and record-breaking fundraising appeals, we pulled out all the stops to continue to bring fun, comfort and friendship to wards and waiting rooms and ease worries during one of the toughest years families have faced.
“None of this would have been possible without the incredible dedication of our supporters, partners, staff and volunteers. This award is recognition of their phenomenal efforts to ensure children in hospital could be children first, patients second, even in a global pandemic.”
https://youtu.be/C8chri-SO_o
You can watch the whole SCVO Scottish Charity Awards 2021 event on YouTube (above).
The winners of the annual awards ceremony dedicated to recognising Scotland’s voluntary sector were announced last night (1 October) in a glittering online event hosted by Sally Magnusson live from the EICC.
Run annually by the Scottish Council for Voluntary Organisations (SCVO), the Scottish Charity Awards celebrates the best of the voluntary sector and this year’s shortlist included 47 individuals and organisations from charities, social enterprises and voluntary groups across the country.
The winner of each of the nine categories was decided by a judging panel, with the tenth People’s Choice category winner decided by the public, with over 12,000 votes cast. As a result this year one finalist received both the Charity of the Year and People’s Choice Awards!
The winners for 2021 are:
Campaign of the year – Stop It Now! Scotland – Get Help or Get Caught
Child Sexual Abuse impacts one in six children in Scotland and targeting offenders is one of the most important ways of tackling abuse before it happens. As a result of the ‘Get Help or Get Caught’ campaign over 79,000 people visited the team’s website and 185 people accessed specialist self-help resources designed for people who are worried about their own online behaviour towards children and young people.
Stuart Allardyce, Director Stop It Now! Scotland said: “We’re thrilled to have won Campaign of the Year for our #GetHelporGetCaught campaign – thank you so much. As a child protection charity, our aim at Stop It Now! Scotland is to prevent children from being sexually abused, whether that’s online or offline.
“Child sexual abuse affects one in six children across the UK, and the number of adults posing a threat to children is growing. Our campaign is one way to tackle that problem, by telling adults who are offending or who might offend about the harm they cause, the consequences, and the support our helpline and website provide to stop their illegal behaviour.”
A special commendation was given to Aberlour Children’s Charity – Aberlour Urgent Assistance Fund.
Volunteer of the year–Central and West Integration Network – Shawn Nicholas Fernandez
Shawn wants to be a role model for both BAME and disadvantaged communities. He successfully made an impact in communities across Glasgow by delivering Cyber Crime Prevention Awareness Workshops and also creating a space through a community gardening project to help refugees by encouraging them to spend more time in nature to benefit their mental health and wellbeing.
Sean said: “I am extremely overwhelmed and proud to be part of Central and West Integration Network and a special thanks goes to all the Staffs and the beautiful volunteers who are always working unconditionally without expectations.
“By winning this award, I hope it will be an eye opener and encouragement for other volunteers especially those that are socially excluded. Nothing is impossible if we put our minds to it. Every organisation should recognise their volunteers and their contributions to the community because they are the cornerstone and should be rewarded.
“Circumstances in life may not always turn out the way we want it to be. Life may not be as smooth as we want it to be. But hard work, dedication and perseverance goes a long way. Thank you.”
A special commendation was given to Bob MacKenzie from CACE (Cumbernauld Action on Care of the Elderly)
Pioneering project – Scottish Families Affected by Alcohol and Drugs – Click and Deliver Naloxone
Over the last ten years, nearly 10,000 families in Scotland lost a loved one through drug-related death. Naloxone is a life-saving medication that reverses opioid overdose, providing vital time to call an ambulance.
The team at Scottish Families recognised the need for access to this vital medication and launched a unique national Click and Deliver service, providing training and free Naloxone by post to any adult in Scotland. From May 2020 until March 2021, the team issued 295 kits, potentially saving 295 lives.
CEO Justina Murray said: “We are absolutely delighted to win the Pioneering Project Award. This life saving project was set up in a matter of days, at the height of lockdown and we are so proud of it.
“Our colleague Suzanne Gallagher has done an awe inspiring job of running this service from her front room, delivering 743 kits and counting. Thanks also need to go to Kirsten Horsburgh and our friends at Scottish Drugs Forum for everything they have done to help create and promote this service.”
Employee of the year – Carers Trust Scotland – Nicola Bell
Nicola has achieved a huge amount in the last 12 months. Working with young carers, she set up #Supermarkets4Change, campaigning to raise awareness of unpaid carers with supermarkets to include young carers in the protected hours set aside for vulnerable people to shop.
This work, led to those young people nominating her for the Scottish Youth Parliament Support Worker of the Year Award, which she went on to successfully win. Resources she produced for professionals and young carers on the topic of supporting carers through a whole family approach have been so well received they are being translated into other languages by European carers organisations to use in their own countries.
She said: “I am so honoured to have won Employee of the Year! I would not be here without the support of the amazing Carers Trust Scotland team and the Scottish Young Carers Services Alliance. To all the incredible young carers & young adult carers – thank you!
“I feel very proud to work with such inspiring colleagues, services and young people each day.”
A special commendation was given to Fiona Mitchell from Harlawhill Day Care Centre.
Community Action – Cumbernauld Resilience
Cumbernauld Resilience was established in March 2020 as a community-based response to the effects of the Covid 19 pandemic. It united people from all over Cumbernauld from a diverse demographic to reach out and help their neighbours.
The team has over 120 volunteers who have freely given their time, expertise and commitment to distribute over 90,000 meals and other essentials to locals – even hosting Christmas celebrations for over 600 people!
Chair Tony Murphy said: “As a relatively new charity, we are humbled and delighted to have been recognised in this way. We are especially delighted to have won in the Community Action Category as, from the outset, Cumbernauld Resilience’s ethos has been about mobilising the wonderful community spirit that exists in our town to help those in need.
“Thank you so much to every supporter, donor and volunteer – without your unbelievable support and unselfish commitment we really wouldn’t have been able to reach out and help so many in our community during their hour of need.”
Climate Conscious – Forth Valley Sensory Centre – Making Sense of Energy Saving
The project helped people cut their energy bills, despite the pandemic, but also secured new heating systems, warmer home payments and even new windows for a number of deaf and blind people who were struggling to heat their homes and pay their bills.
On top of this, with the change to LED lighting in the centre and the advice provided to centre users in braille, workshops, accessible video and BSL, it saved the equivalent of 300 tonnes of CO2.
Chief Executive Jacquie Winning said: “This award covers two of the biggest issues in today’s society, accessibility and the climate emergency.
“Thank you to everyone who supported us and to the staff at our Centre for making such an innovative project come to fruition!”
Trustee of the year – Linkes (SCIO) – Robert Smith
Robert is the co-founder and driving force of Linkes community project (2006), serving as chairperson to promote integration, empowerment and social inclusion. In response to the pandemic, he was visionary and determined, quickly building alliances to set-up a food distribution project.
Between March – September 2020, Robert’s team of volunteers delivered a whopping 18,000 meals and 2,000 grocery packs. Since October he has also overseen logistics of a weekly food-hub. Robert makes the magic happen, whether he is running board meetings, bulk buying food, driving the van, supporting new volunteers, making friendly phone calls– he is an unstoppable force for good.
He said: “I am absolutely delighted to receive this award. It’s not something I expected as the other finalists have all achieved incredible things and I’d like to congratulate them on their work.
“I would also like to thank the amazing team of staff, board and volunteers at Linkes, our partners and funders and everyone else in the community who contributes to what we do. I’m really proud of what we’ve achieved in what has been an extremely difficult year and on behalf of the team at Linkes, I’d like to say a big thank you for this award.”
A special commendation was given to Julia Grindley from Edinburgh School Uniform Bank.
Digital citizens – People Know How
People Know How believe in the inextricable link between social and digital isolation and the pandemic has only reinforced that view.
Over the last year the team has provided devices, digital skills and connectivity to thousands of people across Edinburgh and East Lothian. In doing so, the team has helped people stay connected with loved ones, access support and home-school their children.
Throughout this work they identified that the biggest obstacle to digital inclusion is data poverty, which is why they have now launched a national campaign to end data poverty.
Claudia Baldacchino, Communications & IT Officer, said: “It’s an honour to have been awarded the Digital Citizens Award. We’re so proud of our volunteers and staff for achieving so much over the last year, supporting thousands of people with devices, digital skills and connectivity.
“We’d also like to thank all our partners and funders who have made this work possible through their support and collaboration. We will continue to combat data poverty and digital exclusion as we recover from the pandemic and beyond, and can’t wait to see what the future brings.”
A special commendation was given to Space – The Louise Project.
Charity of the year AND People’s Choice Award – Edinburgh Children’s Hospital Charity (ECHC)
Covid-19 has been a rollercoaster for everyone; no less for children and families in hospital and those privileged to support them. Innovation and dedication from supporters, partners, staff and volunteers saw support for children shielding at home, in wards and waiting rooms continue through the tightest regulations and a hospital move. From emergency care packs, silent discos, inflatable octopuses and record-breaking fundraising appeals, ECHC has excelled to ensure children in hospital are children first, patients second, even in a global pandemic.
Victoria Buchanan said: “We are absolutely thrilled to be named Charity of the Year and People’s Choice winner at the Scottish Charity Awards 2021! Through the tightest Covid restrictions and a hospital move; ECHC was privileged to stand alongside those ill, injured and shielding at home.
“From emergency care packs, silent discos, giant inflatable octopuses and record-breaking fundraising appeals, we pulled out all the stops to continue to bring fun, comfort and friendship to wards and waiting rooms and ease worries during one of the toughest years families have faced.
“None of this would have been possible without the incredible dedication of our supporters, partners, staff and volunteers. This award is recognition of their phenomenal efforts to ensure children in hospital could be children first, patients second, even in a global pandemic.”
A special commendation was given in the Charity of the Year category to North Edinburgh’s Scran Academy SCIO.
Anna Fowlie, Chief Executive of SCVO, said: “At SCVO we know that fantastic work is going on all the time in the voluntary sector and we were delighted to celebrate the achievements and successes of our finalists and winners at this year’s Scottish Charity Awards.
“We had a record-breaking number of entries this year and each one demonstrated just how well the voluntary sector has responded and adapted to changes and restrictions over the past 12 months.
“Thanks to our sponsors, the team at the EICC, our host Sally Magnusson and everyone who applied and voted for making this year’s Awards so special. Congratulations to our winners for 2021!”
The brave mother of Christopher Nelson, who sadly drowned in 2015, has tackled her fear of water by completing a swimming relay in the loch where her son’s ashes are scattered.
Christopher, 24, tragically died after falling into a canal in Amsterdam while on holiday in the city with his fiancé.
Now, his mother Donna – who previously could not swim and who has had an immense fear of water since her son’s death – has swam a 27km relay with friends and family in St Mary’s Loch in his memory.
Donna’s swim was originally planned for May 2020 but had to be rescheduled due to Covid. To prepare for her challenge, she learned to swim by attending adult swimming lessons with instructor Jen Henderson at Lasswade Centre.
Donna said: “This challenge was the worst one mentally and emotionally for me that I have ever done by far, considering I couldn’t swim before and Christopher drowned in open water but I crossed that finish line for my boy!
“Before I started my lessons, I hadn’t been in a swimming pool since Christopher died. Even when I stood in the shower, I couldn’t put my face under the water. There hasn’t been a morning in the last six years where I’ve stood in the shower and not thought about what happened to my son.
“It was such an emotional swim but the support of my team, Steven Nelson the Water Safety Crew Manager and Niall Cassidy from Driftwood Adventures and his team were phenomenal. All of us felt so safe in their capable hands.
“We couldn’t believe how kind the weather was to us considering the week we’d had – I think my boy had a wee hand in that for his mum!”
Donna’s swim was a fundraiser for Edinburgh Children’s Hospital Charity (ECHC), which supports the Royal Hospital for Children and Young People – a charity close to the family’s heart.
She added: “Christopher was a mad sports person as a little boy, so we were on first name terms with the A&E staff at the Sick Kids as he had so many sports-related injuries.
“He was very athletic and used to really inspire me to do things I would never do. He was my inspiration for most things in life. He would never believe that I would take swimming lessons, and especially not that I would swim in open water.
“When I complete my challenges, I’m always sobbing my eyes out but also have such a sense of relief. Afterwards, I always look up to the sky and say ‘love you son’ and have a moment with him – this one was no different.
“I can’t thank everyone enough who has donated and supported us for this mammoth challenge for my boy.”
The grieving mum and her family and friends – also known as ‘’Donna’s Prosecco Posse” or #teamnelson – have so far raised over £40,000 for ECHC by completing a series of fundraising challenges since 2015, including Tough Mudder and a 200-mile cycle. Her swim has so far raised over £9000.
Victoria Buchanan, Deputy Director of Fundraising and Marketing at ECHC, said: “Donna is hugely admirable, inspiring and brave and we would like to say an enormous congratulations to her and her friends and family for completing what we know was an incredibly tough challenge – both physically and mentally.
“We are so grateful to be Christopher’s family’s chosen charity. The money Team Nelson are raising will have a huge impact on the lives of children, young people and their families and make a phenomenal difference during their time in hospital. We cannot thank them enough for their incredible continued support.”
Donna and Christopher’s family and friends completed the 27km swim relay on Saturday 22nd May in St Mary’s Loch, supported by Steven Nelson (no relation) Founder and Manager/Activities Coordinator of Beyond Boundaries East Lothian and volunteers who very kindly agreed to be the Water Safety Crew, as well as Niall Cassidy and his team from Driftwood Adventures.
Donna’s team’s fundraising page is still open. To support them, visit:
· This is the first time MRI-guided Laser Interstitial Thermal Therapy (LITT) will be available in Scotland
· The surgery is currently only available at Great Ormond Street Hospital in London or in Houston, Texas
· The current surgery choice in Edinburgh is open brain surgery, which is around seven hours and leaves an ear to ear scar. LITT will reduce this to two hours and is much less invasive
· Children and young people who will be referred for this surgery have refractory (medication resistant) epilepsy and can have up to 100 ‘drop down’ seizures a day
· In appropriately selected cases, LITT surgery can stop seizures entirely and cure the child’s epilepsy
Children and young people living with severe epilepsy in Scotland will have the life-changing chance to be seizure free, thanks to the funding of a world class laser coming to Edinburgh’s new children’s hospital.
A partnership between the Welch Trust, Edinburgh Children’s Hospital Charity (ECHC) and NHS Lothian is bringing MRI-guided Laser Interstitial Thermal Therapy (LITT) for Edinburgh’s Royal Hospital for Children and Young People (RHCYP) – the first time this laser technology will be available in Scotland.
LITT is a new and proven, minimally invasive treatment which uses a laser to remove brain tissue that is causing seizures. Children and young people who will be referred for laser surgery are diagnosed with refractory (medication resistant) epilepsy; they may experience severe and frequent ‘drop down’ seizures, up to 100 in one day. In appropriately selected cases, laser surgery can stop seizures entirely and cure the child’s epilepsy.
LITT surgery treatment is currently only available at Great Ormond Street Hospital (GOSH) and in Houston, Texas. The laser equipment will be part of the Scottish National Paediatric Epilepsy Surgery Service, based at the RHCYP in Edinburgh, meaning children will come to the capital from all over Scotland to have the surgery.
The current surgery choice practiced in Edinburgh is open brain surgery, which lasts around seven hours, has a longer recovery time and results in a scar across the top of the child’s head.
The LITT precision technology will reduce this surgery time to around two hours, is much less invasive and has a shorter recovery time. It is expected that up to six children a year could benefit from the laser surgery, aged from infants to adolescents, with a similar number of adults also benefitting annually.
Following a request from the National Epilepsy Surgery Service to ECHC to support this initiative, the charity identified the Welch Trust as the ideal funder and agreed a partnership to make this project a reality.
Victoria Welch, Trustee of the Welch Trust, said: “We are very proud to be able to gift this LITT technology to the new Royal Hospital for Children and Young People. As a Paediatric Nurse, I understand the importance of having the best equipment in the hospital to expedite the curing of patients with complicated conditions and ultimately save lives.
“When we were made aware of this need, we didn’t have to think too long about it. Our focus continues to be to invest in high impact programmes that save lives or significantly improve the quality of life for very sick or terminally ill children. We look forward to continuing our partnership with the Edinburgh Children’s Hospital Charity and expanding our support across other areas of critical care.”
Roslyn Neely, CEO of Edinburgh Children’s Hospital Charity, said: “With the new children’s hospital now open, we are thrilled to have partnered with the Welch Trust to bring the world-class LITT equipment to Scotland for the first time.
“It is always very satisfying for us to be able to join with another funder who have a similar desire to support the hospital with projects that will transform children’s health.
“Having the laser surgery available in Edinburgh gives families more choice in their place of care and means they will no longer need to endure the financial and emotional cost of national or international travel and separation at a very stressful time. It will also place Edinburgh and NHS Lothian on the map as a world-leading provider of epilepsy surgery and treatment.”
Dr Edward Doyle, Associate Medical Director, Women and Children’s Services, NHS Lothian said: “Across NHS Lothian, we continually look at new and emerging technology and treatments to see how they could benefit our patients.
“We are delighted that through the support of both the Welch Trust and Edinburgh Children’s Hospital Charity, we will be the first in Scotland and only the second location in the whole of the UK to offer LITT surgery.
“Severe epilepsy can be very difficult to live with and puts an enormous strain on families. Having a world-class cutting edge treatment option available here in Lothian, which is both less invasive and which reduces recovery time, will make a huge difference to lives of children and their families across Scotland.
“This treatment really does have the potential to transform lives and our teams at the Royal Hospital for Children and Young People are delighted that they will soon be able to offer it as a treatment option.”
The new laser equipment is compatible with the intra-operative MRI suite at the RHCYP. It is expected to arrive in summer 2021, followed by a period of intensive training prior to the first surgery taking place.
Gillespie Macandrew announces new charity partnership with Alzheimer Scotland and Edinburgh Children’s Hospital Charity
Leading Scottish law firm Gillespie Macandrew has begun a three year charity partnership with Alzheimer Scotland and Edinburgh Children’s Hospital Charity (ECHC). Alzheimer Scotland provides support for those living with dementia and the ECHC supports children and their families in a variety of healthcare settings.
The new partnerships are a key part of the Firm’s overall Corporate Social Responsibility (CSR) programme, which includes donating 1% of pre-tax profits each year to the nominated charities. The firm has an established and active CSR committee which includes representatives from all four of Gillespie Macandrew’s offices.
As well as financial support, staff are given a day off each year to take part in charitable activities and as a result of this commitment to the nominated charities, the Firm has donated a total of over £130,000 in the past five years.
Chief Executive Officer Robert Graham Campbell commented: “We have a long and proud history of supporting charitable causes, whether it is engagement though volunteering, providing funding and pro-bono legal advice or partnering to host training opportunities.
“We look forward to working with our two new charity partners to support the excellent and valuable work they do.”
Stakeholder Engagement Lead from Alzheimer Scotland, Caroline Miller said: “The incredible commitment from Gillespie Macandrew will help us provide a range of person-centred support for people living with dementia and their families, who have been devastated by the pandemic.
Money raised will also go towards our exciting project to build the UK’s first Virtual Dementia Resource Centre so we can offer support no matter where you are and what time of the day it is.”
ECHC’s Fundraiser Amy Ford added: “Gillespie Macandrew’s support over the next three years means that we can continue transforming the experiences of every child and young person in hospital and healthcare throughout the duration of the pandemic and beyond.
When the new Royal Hospital for Children and Young People opens on Tuesday 23 March, ECHC will be there to support children, young people and families in many ways and we simply could not do this without the generosity and kindness of our charity partners like Gillespie Macandrew.”
Alzheimer Scotland and ECHC were nominated and voted for by staff and Gillespie Macandrew is pleased to be able to offer our support, particularly at a time of increased pressure on the services they provide.
The firm has offices in Edinburgh, Glasgow and Perth and advises on all areas of land and rural business, private client, commercial real estate, energy, tax and disputes.
An Edinburgh mum whose son has been in hospital at Christmas time every year since he was born is supporting a charity appeal to make this Christmas as magical as possible for children at the Sick Kids.
Claire Narrie’s son Josh, age 3, was born with a complex heart condition and has spent much of his short life in and out of intensive care.
Claire said: “When Josh was born in 2017, he spent six months in intensive care, so we knew his first Christmas would be in hospital.
“In December 2018 though, things were looking good. We allowed ourselves to get excited to finally be at home for Christmas. Josh had been invited to some little parties with his friends, we had bought lots of presents and we were desperate to take him to see the Christmas lights in town – something we’d tried to do the year before but missed out on.
“But Josh became really unwell and we found ourselves back in intensive care at the Sick Kids. He had a common virus but because of his heart, lung and immune system problems, it floored him.
“It’s devastating to be robbed of Christmas. Every year, as Josh’s friends have put their Christmas jammies on and laid out mince pies and milk for Santa, we have sat at our little boy’s bedside, willing him to keep fighting.”
Claire and husband John will always be grateful for all the care and support both they and Josh received while in hospital over the festive period.
Now, the family are backing Edinburgh Children’s Hospital Charity’s (ECHC) new Christmas appeal, which aims to “give Christmas back” to those children and young people who are unfortunately too ill to spend it at home this year.
Claire continued: “When you’re in hospital, everything goes on hold. Time just stops. Your baby is all that matters. Especially when you’re upstairs in critical care, it is isolating and the days are long. But the support provided by ECHC has made such a difference to every Christmas we have spent in hospital.
“The activities and visitors arranged by the charity throughout December have always given us things to look forward to, and break up the day. On the most difficult days, we have left the hospital feeling uplifted.
“Josh had met the Scotland Rugby Team in the past and when they came to the ward they remembered him and spent special time with him. Christina the ballerina was wonderful and he loved Rhys the musician who sang songs with him. When he was well enough, we would go for little walks and he loved to find the charity’s Living Advent Calendar Doors hidden around the hospital.
“This year, we are desperate for Josh to be well and at home but the anxiety is crippling. We really hope we don’t have to spend another Christmas in hospital but we know if we do, ECHC will be there for us and all the children like Josh. Alongside the amazing NHS teams, they’ll make sure that families won’t miss out on the magic and joy. The kids will be treated like the heroes they are.”
Victoria Buchanan, from ECHC, said: “After such a difficult year, ECHC needs help now to give Christmas back to children at the Sick Kids. Due to the pandemic, restricted visiting is in place on hospital wards, which means no visits from siblings, grandparents or friends.
“With all the worry and limitations of lockdown and shielding for thousands of families this year, it is more important than ever that we ensure no child or young person in hospital misses out on the joy of the festive season.
“Every year, ECHC makes Christmas magical for children in hospital by creating a living advent calendar around the wards with a new surprise behind each door. It’s going to be a little different this year as we are unfortunately unable to have visits from large groups, such as Edinburgh’s football and rugby teams, but we are determined to make this the biggest and best Christmas yet, with everything from a real ballerina to festive magic sessions and a samba band!
“We also fund the parents’ accommodation so families can stay close to their children at Christmas, the hospital play team and Christmas gifts to make sure treats and distractions are always available to bring smiles and comfort.
“We rely solely on donations in order to do this. Please help by making a donation to ECHC this Christmas. You could give a child in hospital their Christmas back.”
To donate now to ECHC’s Give Christmas Back appeal, visit
A transformation has been afoot at the Royal Hospital for Sick Children this week.
Capital Theatres’ Learning and Participation Coordinator Cat Sheridan has been working with Edinburgh Children’s Hospital Charity’s (ECHC) arts team at the hospital to tempt those who can climb out of their beds to transform their space into one filled with their own stories and imagination.
A continuation of a brilliant established relationship between Capital Theatres and ECHC throughout 2020, Curtains Up is a brand-new project which brings a bit of old school overhead projector fun to bedsides, creating unique and playful scenes on the inside of hospital curtains.
The children created original drawings which have been projected and traced onto their hospital bed curtains, proudly displaying their art to their families and the rest of the ward. Curtains Up gives children autonomy over their environment while staying in hospital, creates a child centric environment and fosters creativity between families and staff.
Mackenzie and Cat Sheridan working together on Curtains Up
Cat Sheridan, Learning and Participation Coordinator at Capital Theatres, said: “We are hugely excited to be back working in partnership with Edinburgh Children’s Hospital Charity on this project.
“It has been a real treat for me to deliver on the wards, working with fantastic staff and being greeted by so many smiles. The joy is in seeing children and their families grow in confidence, take charge and have so much fun! Our aim is to encourage creativity and boost their sense of well-being. All through transforming something as simple as curtain with a bit of imagination.”
Fiona O’Sullivan, Deputy Director of Children’s Wellbeing, said: “The visits from Capital Theatres always prove hugely popular with children and young people in the hospital so we are very excited to welcome them back for the Curtains Up project.
“Decorating their hospital space is a fantastic and fun way for children to get creative and make their bedside environment feel a little less scary and more like their own home.
“We would like to say a huge thank you to Capital Theatres for getting involved with our vital arts programme as it’s projects like this one that enable ECHC to continue to transform the lives of children and young people in hospital.”
Lesley-Ann, play specialist, said: “It was such engaging activity for the older age groups to do. It’s something thing different and was so nice to see them engage with it so much. Nancy went away with big a smile on her face, she was totally loving it!”
The team from the Amazon Customer Service Centre in Edinburgh has donated a total of £1,500 worth of toys and pyjamas to Cancer & Leukemia Advice & Support for Parents (CCLASP) and Edinburgh Children’s Hospital Charity as part of the company’s global Amazon Goes Gold campaign during Childhood Cancer Awareness Month.
Amazon Goes Gold is Amazon’s annual campaign to raise awareness and funds during Childhood Cancer Awareness Month. In addition to partnering with hospitals and research organisations around the world, Amazon also wraps a selection of its delivery fleet in gold ribbons during the month of September to further increase awareness across its network. The Amazon Goes Gold campaign was launched in 2017.
Valerie Simpson, from CCLASP, said: “It’s fantastic to see so many of the team at the Amazon Customer Service Centre in Edinburgh working in their pyjamas in support of Childhood Cancer Awareness month!
“I’d like to thank Rachel and the team for raising awareness through #AmazonGoesGold and for providing us with a donation, which will be greatly appreciated by everyone at CCLASP. We could hardly believe it when the team showed up with all the pyjamas and toys – the children will love them.”
While we’re all facing a global pandemic, more than 300,000 children will also be diagnosed with pediatric cancer this year, and it’s the number one non-communicable disease causing the death of children around the world.
“We’re incredibly proud to partner with CCLASP and Edinburgh Children’s Hospital for Amazon Goes Gold,” said Rachel Seaward-Simpson, Site Leader at the Amazon Customer Service Centre in Edinburgh.
“We want patients and kids everywhere affected by childhood cancer to imagine the future innovators in themselves. It’s an honour to make a difference for such an important cause that affects families around the world.”
This donation will support CCLASP and Edinburgh Children’s Hospital in their missions to provide practical and emotional support to families affected by childhood cancer.
An Edinburgh teenager who defied medical experts has had his passion for dancing transformed into artwork for Edinburgh’s new Sick Kids hospital.
Evan Glass, 13, battled through his first two hours of life and mum Danni was told he may never eat, talk or walk. Since birth, he has been fascinating medical experts with his resilience – but it is his dance performances which most often leave people speechless.
Evan began dancing five years ago through attending classes run by Edinburgh Children’s Hospital Charity’s (ECHC) Arts Programme. Run in partnership with Dance Base, the classes support children receiving treatment at the Royal Hospital for Sick Children with their physiotherapy. Through dance, Evan has completely transformed the way he moves.
Danni Glass, Evan’s mum, said: “I was given the news that every mum fears after giving birth – I was told that my baby wouldn’t make it. Doctors still can’t believe he is here but he is proving everybody wrong!
“Since beginning ECHC’s Step Out dance classes, Evan has come on leaps and bounds. His movements used to be quite stiff and robotic but now he moves much more fluidly. His balance has also really improved but where we have seen the biggest changes are in his confidence – it has really helped to bring him out of himself.”
When Evan was offered the opportunity by ECHC to have his dancing made into a piece of artwork for the new Royal Hospital for Children and Young People (RHCYP), he jumped at the chance.
To create the piece, Evan and Dance Base Instructor Christina Liddell wore sensors on their wrists and ankles which tracked their movements as they danced together. These movements were digitalised and coloured, then transformed into the beautiful piece of artwork that is now displayed for all to see on entering the new children’s hospital.
Danni said: “Evan is my little miracle. I am so, so proud of everything that he has achieved. He just forgets everything when he dances and loses all of his anxieties – it’s just wonderful to watch.
“He was so excited to take part in the making of the artwork with Christina and thinks the finished piece is the greatest thing ever. I never realised it would be as big as it is – it’s absolutely amazing! When he first saw it, he was so chuffed and wanted to take photos from every angle. It’s just incredible to think that his artwork is now on display for people to see in the hospital forever.”
Fiona O’Sullivan, Arts Programme Manager at ECHC, said: “We are all so proud of just how far Evan has come with the help of our partnership with Dance Base. Since starting out, he has danced with Christina at a number of our events and he always steals the show!
“Our Arts Programme doesn’t just provide distraction for children in hospital – it achieves real results that help to improve patients’ health and wellbeing.
“Evan is testament to this and we are thrilled that his artwork is now on display at the RHCYP so visitors can see just how remarkable he is.”
ECHC’s Arts Programme will play a key role at the RHCYP when it opens next year. The charity has funded over £3.1million worth of enhancements at the new hospital to give children and young people a positive hospital experience.
Evan’s artwork is just one of the many beautiful and often interactive art and design pieces that can be seen throughout the new building.
To help support more children, young people and families in hospital and healthcare like Evan and Danni, donations can be made at www.echcharity.org/donate
Families with vulnerable children who are shielding at home in Edinburgh are having hundreds of books delivered to their doorsteps thanks to a new charity partnership.
Edinburgh Children’s Hospital Charity (ECHC) – which supports the Royal Hospital for Sick Children – has teamed up with Edinburgh City Libraries to help children and their siblings feed their imaginations while shielding for 12 weeks.
With libraries currently closed, Edinburgh City Libraries & Information Services has made available a Book Bus filled with around 1800 books for children and young people to ECHC.
The bus is stationed at the charity’s office, where volunteer delivery drivers collect book packages and deliver them to local families who are known to the Sick Kids hospital on a regular basis.
Through the book deliveries, the charity aims to bring fun and distraction to children and to help improve their mental wellbeing during lockdown.
The book delivery service has also been made possible thanks to generous sponsorship from Baillie Gifford.
Caroline Leishman has been shielding her family of three boys for eight weeks as her youngest son Finlay is on active treatment for Leukaemia.
She said: “Coming up with new and exciting ways to keep everyone occupied and distracted while also looking after a clinically vulnerable child becomes a little bit harder as each week goes by.
“It was such a relief when the book parcel from ECHC arrived on our doorstep. The kids were so excited to open it and discover all the new books they had to read which gave us some much needed breathing space!
“Books are such a wonderful resource for children who are shielding. They let their imaginations run wild so they can go on all sorts of fantastic adventures without ever leaving the safety of home.”
Roslyn Neely, CEO of ECHC, said: “We know from our work in the hospital that taking part in fun and creative activities that feed the imagination is the best way to take away children’s fear and feelings of isolation when they are unwell.
“It must be unimaginably tough for children and their siblings having to shield at home when they already face significant health challenges. We know the power of storytelling and the benefits that brings to children in hospital so we’re positive it will have the same effect in the home.
“We believe that nothing should get in the way of being a child. Even though they can’t physically be out and about in the world right now, children have a huge appetite for adventure and there’s a whole world of creativity and magic in their imaginations.
“Bringing books to their doorsteps through this wonderful partnership with Edinburgh City Libraries is a great way to ensure they still have access to that. We’re also so grateful to Baillie Gifford for their sponsorship and to all our volunteer drivers for making this possible.”
City of Edinburgh Council Leader Adam McVey said: “We’re delighted we can help families known to the Sick Kids and thanks to our library team who have been superb. One of our mobile libraries is filled with about 1,800 children’s books so what better way of putting these books to good use.
“Books are a wonderful resource and will really help families having to self-isolate in their homes for 12 weeks. Reading as a family is a joy and can help to improve wellbeing – a recent study found that six minutes of reading can reduce stress levels by 60%. This is a great example showing how working together with partners in the city can respond to the needs of our communities.”
Book deliveries are one of a number of things that ECHC is doing to support children and families during the pandemic, all of which are being delivered safely in line with government restrictions during this time. All books that are returned to the Book Bus will be held on board for 72 hours for infection control before being recirculated.
The charity is also distributing Emergency Care Packs of food and essential supplies, toiletries and arts and activity items.
Families known to the Royal Hospital for Sick Children who would like any of the emergency care packs on offer are asked to contact Leigh at ECHC on 0131 668 4949 or leigh.drake@echcharity.org.
Although City of Edinburgh Council libraries are currently closed the public can still borrow e-books, e-audio books, e-newspapers and e-magazines online using their library card.
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