Tag: Edinburgh Children’s Hospital Charity

Grateful Edinburgh mum backs Sick Kids Christmas Appeal


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 

www.echcharity.org/christmas

#GiveChristmasBack

Curtains Up: transformation at Sick Kids

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!” 

Nancy and her mother

Amazon Edinburgh makes donations to local charities for Childhood Cancer Awareness Month

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.

Edinburgh boy defying doctors celebrated with artwork at New Sick Kids

 
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 

Hundreds of books delivered to vulnerable families in isolation

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.

Donations to ECHC’s Emergency COVID-19 Appeal can be made online at: https://echcharity.org/support-us/covid-19-appeal

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.

If you’re not already a library member, you can join online at: https://yourlibrary.edinburgh.gov.uk/web/arena/join-the-library

Open Up Your Heart – Remembering Tom Gilzean

On the 75th Anniversary of VE day, just a few days ahead of what would have been his 100th birthday, Edinburgh Children’s Hospital Charity is asking people to share their remembrances of Tom, and to make a donation in his memory to help the children, families and staff of the Sick Kids hospital.

12 May 2020 marks what would have been the 100th Birthday of one of Edinburgh’s most beloved citizens – Tom Gilzean.

An indomitable spirit, decorated war veteran, and retired bus driver, Tom took up collecting for charity after his wife Anne died, and raised well over £1 million for his chosen charities.

Come rain or shine, he could be found in his bow tie and tartan trews, proudly displaying his medals and asking people to “open up their hearts” for the Sick Kids. When asked why he kept going with his phenomenal fundraising Tom would say, “I just want to help the children and keep them safe.”

When Tom passed away in November 2019, crowds lined Princes Street to witness his funeral cortege, scenes that would be unimaginable today as the centre of Edinburgh lies silent and deserted.

This spring, a host of events had been planned to honour Tom on his 100th birthday. Lockdown is preventing such public celebrations of the life of such an extraordinary man, but his incredible contribution to Edinburgh life should not be allowed to slip by.

While it is impossible to know what Tom would have made of the current situation, his son Douglas said, “I’m sure dad would have tried his best to find a way to help.”

You can email your memories of Tom to hello@echcharity.org, tweet us @echcharity or leave a message with your donation.

Please “open up your heart” and keep Tom’s memory alive by supporting the children and families of the Sick Kids.

Donate now

Thank you.

Edinburgh Charity Delivers Emergency Care Packs to Vulnerable Families Shielding at Home

An Edinburgh children’s charity is delivering emergency care packs to families who have a vulnerable child and are currently shielding at home due to the COVID-19 pandemic.  

Last week, Edinburgh Children’s Hospital Charity (ECHC) – which supports the Royal Hospital for Sick Children – began providing free emergency packs of food and essential items to families visiting or being discharged from the hospital.   

Now, the charity has expanded this service and is delivering the free care packs to the homes of clinically vulnerable families who are known to the RHSC and who are currently shielding for an extended period to protect themselves during the pandemic.   

The packs contain food products and essential items including nappies, toilet roll, tinned soup, beans and tea bags to support families while they cannot leave the house to go shopping. 

The charity is also in the process of developing toiletry packs and creative care packs with art supplies to help keep children entertained at home and reduce isolation.  

ECHC is delivering the packs to families’ doorsteps, as well as to nursing bases where community nurses and health visitors are also helping to distribute them. The charity will keep in regular contact with the families throughout their isolation period to meet their needs if they require additional packs.  

Louise Sharkey and partner Graeme have been shielding their 12-year-old son Charlie, who has a rare genetic disorder and epilepsy, and his four-year-old brother Jack at home for over three weeks.  

Louise said: “During this difficult time, ECHC continues to be a well needed support that we are extremely grateful for and have relied on during many hospital admissions over the years. They are at the end of the phone should we need emotional support and are liaising closely with the palliative care team to provide support also.   

“Recently a care pack was dropped off at our house by the charity containing essential supplies that can be difficult to source right now. We have been finding it hard to get deliveries from supermarkets, so we were running low on things like antibacterial hand soap, pasta, toilet rolls, baby wipes and some cereals.

“We are very lucky to have a good family support network who have been providing us with essentials should they be needed but it’s not always easy for them as they don’t live close by.  

“The bag of essential supplies that came from ECHC was extremely useful as it contained extra toilet rolls and baby wipes that we use a lot with Charlie, and cereal. Jack was delighted that it contained some treats too! The charity is a lifeline for many families during hospital stays and at times like these in the community too.”  

ECHC recently launched its COVID-19 Emergency Appeal to help families having to cope with the impact of the outbreak on top of the distress of having a sick or injured child.  

Roslyn Neely, CEO of ECHC, said: “Right now, all families are facing the challenges of lockdown. Keeping children fed and happy, and organising shopping trips on top of everything else, becomes even more difficult if you have a sick or injured child in hospital, or if you are returning home from hospital to begin an extended period of shielding or isolation.  

“The incredible NHS staff are working round the clock to make sure every child gets exceptional care throughout the crisis and we at ECHC are doing everything we can to help to reduce fear and isolation and to comfort and support families when they need it most.  

 “These emergency care packs have only been made possible thanks to the kindness of our supporters donating to our COVID-19 Emergency Appeal. We urgently need donations to continue to do this.   

“Times are difficult for all of us, but if anyone would still like to give, donations could provide a family with a much-needed care pack, fund a special play session at a child’s bedside or pay for a mum and dad to stay in our parent accommodation and be close to their child at the toughest of times.”  

To receive a care pack – Families known to the Royal Hospital for Sick Children who would like an emergency care pack are asked to contact Leigh at ECHC on 0131 668 4949 or leigh.drake@echcharity.org. 

 To support ECHC – A donation of £10 could fund an emergency care pack for one family, £15 could fund a special bedside play or creative session and £50 could pay for parents and carers to stay in ECHC’s parent accommodation for one week.

 Donations can be made online at 

https://echcharity.org/support-us/covid-19-appeal 

Charity provides Emergency Supply Packs to Sick Kids’ Hospital

An Edinburgh children’s charity is providing emergency supply packs to support children and families in hospital through the COVID-19 pandemic. 

 Edinburgh Children’s Hospital Charity (ECHC) – which supports the Royal Hospital for Sick Children – has launched an emergency appeal to help families having to cope with the impact of the outbreak on top of the distress of having a sick or injured child.  

The free emergency packs contain non-perishable food products and essential items including nappies, toilet roll, tinned soup, beans and tea bags so parents and carers do not have the additional stress of shopping for their families while their child is in hospital.  

As well as emergency parcels, ECHC is working hard to continue to provide its services to the RHSC during the pandemic. The charity’s hospital shop is staying open to fuel NHS staff over the coming weeks; it has launched a telephone support service to give advice and assurance to families; play specialists continue to provide smiles and distraction while the ward playrooms are closed; and it is continuing to provide parent accommodation so families can stay close to their children during lockdown.  

Roslyn Neely, CEO of ECHC, said: “The safety of children, families and NHS staff is our immediate priority. These are unprecedented times for all of us and, just like at home, things are different at the ‘Sick Kids’. Children and families are anxious as the pandemic progresses. 

 “Right now, people may be feeling scared, stressed, isolated from family and friends or worrying how they will keep themselves and their family fed and occupied. Now imagine if you also had a child in hospital. 

“The incredible NHS staff are working round the clock to make sure every child gets exceptional care throughout the crisis and we at ECHC are doing everything we can to help to reduce fear and isolation and to comfort and support families when they need it most.   

“This is why we have launched our COVID-19 Emergency Appeal as we urgently need donations to continue to do this. Times are difficult for all of us, but if anyone would still like to give, donations could provide a family with a much-needed food pack, fund a special play session at a child’s bedside or pay for a mum and dad to stay in our parent accommodation and be close to their child at the toughest of times.”  

A donation of £10 could fund an emergency supply pack for one family, £15 could fund a special bedside play or creative session and £50 could pay for parents and carers to stay in ECHC’s parent accommodation for one week. 

Donations can be made online at https://echcharity.org/support-us/covid-19-appeal 

Brave Mum to tackle fear of water in memory of son who drowned 

The brave mother of Christopher Nelson, who sadly passed away in 2015, is to undertake her biggest challenge yet by getting back in the water for the first time since his death. 

Christopher, 24, tragically drowned after falling into a canal in Amsterdam while on holiday in the city with his fiancé.  

 Now, his mother Donna, 49 – who cannot swim and who has had a great fear of water since his death – is set to swim a 20km relay with friends and family in St Mary’s Loch, where her son’s ashes are scattered.  

Donna, who is currently learning to swim by attending adult swimming lessons with instructor Jen Henderson at Lasswade Centre, said: “I’ve not been in a swimming pool since Christopher died.

“Even when I stand in the shower, I can’t put my face under the water. There hasn’t been a morning in the last four years where I’ve stood in the shower and not thought about what happened to my son. 

“It has taken me weeks to put my face under the water at my swimming lessons. I didn’t understand how quiet it was under there – it makes me think, ‘was it quiet for Christopher?’ I hope this challenge will help me find peace somehow.”  

Donna is fundraising for Edinburgh Children’s Hospital Charity (ECHC), which supports the Royal Hospital for Sick Children – 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 encouraged me to do the Couch to 5K and used to send me music to run to. 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.”  

The grieving mum and her family and friends – also known as ‘’Donna’s Prosecco Posse” or #teamnelson – have so far raised over £30,000 for ECHC by completing a series of fundraising challenges since 2015, including Tough Mudder and a 200-mile cycle.  
 
Although each new challenge is harder than the last, Donna says she channels her son to give her the strength to complete it.  

She said: “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.  

“I couldn’t think of a bigger challenge than this one but I’m doing it for Christopher, so that his legacy and his name will live on forever. By hook or by crook – I will cross the finish line.”  

Rachel Baxter, Director of Fundraising and Marketing at ECHC, said: “We are enormously grateful to be Christopher’s family’s chosen charity. Donna is hugely admirable and inspiring and we wish her the very best of luck with this new challenge.  

“The money they 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 the family enough for their incredible continued support.”  

Donna and Christopher’s family and friends will be swimming the 20km on Saturday 16th 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 have very kindly agreed to be the Water Safety Crew.  

To support Donna and those taking part in the challenge, donations can be made at: https://teamechc.everydayhero.com/uk/donna-s-open-water-swim-challenge