They see themselves as human, no different to you and me.
But for the families, they made the unbearable that little bit more bearable during their darkest moments.
Today we meet the unassuming unsung heroes who are there day and night to ensure families are not alone when the worst happens.
During unimaginably desperate times, they walk alongside families, effectively wrapping their arms around them with their care, support and compassion.
Although they would prefer to remain behind the scenes, today families are shining a light on the incredible people who were there for them when they needed it most.
The Children’s Hospices Across Scotland (CHAS)
In the loving arms of his mumma, with his daddy’s hands wrapped around his little fingers and his precious dog Barney snuggled at his feet, 11-year-old Finlay James Donald (Fin) passed away peacefully in his own bed in May last year.
Preparing for your own child’s death is something no parent should ever have to face.
But that is the excruciating and unimaginable reality facing families like the Donalds, from Aberdeenshire, on a daily basis.
For Finlay’s mum Gillian and dad Neil, two incredible people were there at every step of the way to ensure that their plans for their “amazing” little boy’s death were honoured, and he died in his own home.
Those two people were Dr Fiona Herd, a paediatric (oncology) consultant who leads the palliative care service in Aberdeen, and Louise Esson, a CHAS Diana children’s nurse.
They are leading a pioneering partnership between the Children’s Hospices Across Scotland (CHAS) charity and the Royal Aberdeen Children’s Hospital (RACH), to support families in a way that works for them.
“We are particularly grateful to CHAS that despite the Covid-19 pandemic, Louise and Dr Fiona worked in partnership with the RACH team to ensure that our plans for Fin’s death were honoured, and he died in his own home,” said Gillian.
With an amazing sense of humour and a love of messy play, Finlay’s fun-loving character belied the complex health challenges he faced.
Diagnosed with a very rare degenerative peroxisomal disorder, called D-Bifunctional Protein Deficiency, also known as pseudo-Zellweger, Finlay bravely battled through the pain he was constantly in.
“During the last few years of Fin’s life, his care needs escalated and included the need for respiratory support through Bi-pap, chest physio, regular suction and oxygen; a special Gastrojejunostomy button through which all his feeds and medicines went to his small bowel and numerous pain medicines to help him with the chronic pain he was constantly in,” said Gillian.
It was during this time that CHAS became involved in supporting Finlay and his family’s wishes to remain at home.
“Spending time in a hospice, with other people involved, was not what we wanted,” said Gillian.
“CHAS respected us as a family and wanted to provide help in a way that worked for us.
“The CHAS at Home team knew that we wanted to provide full-time care to Fin ourselves, without having outside carers involved, making the most of every minute with him.
“To support this, every few weeks they arranged for two nurses to care for Fin for a few hours, giving us some time to rest, and Fin lots of fun with specially chosen activities.
“We were always nearby in case Fin needed us, and Fin really enjoyed his special time with the team.”
Louise Esson, the CHAS Diana children’s nurse, became a very special person to the family.
“Louise helped us prepare our Anticipatory Care Plan and CYPADM, the formal documentation detailing what would happen when Fin died,” said Gillian.
“There are no words to explain how hard it is as a parent to plan for your child’s death.
“Louise guided us through making these plans, supported us during Fin’s deterioration, and did everything she could to ensure Fin had the right death for him.”
In the last few month’s of Finlay’s life, Dr Fiona Herd also became involved in his care.
“Dr Fiona was able to come to our home and spend as much time as was needed to help us through Fin’s last few months,” said Gillian.
“We have a lovely memory of a visit from Dr Fiona and Louise a few days before Fin passed away, in which we were all entertained by his love of rude noises.”
Finlay passed away peacefully surrounded by his family last year.
“On the 22nd of May 2020 our amazing little boy, Finlay James Donald (‘Fin’), peacefully passed away in his own bed, in the arms of his mumma’s hug, with ‘Finlay’s daddy’, Neil, holding his hands and his precious dog Barney snuggled at his feet,” said Gillian.
For the family, they will never ever forget the love, care and support they were shown.
“Many people think CHAS is mainly about the hospice facilities, but don’t realise that they do so much more than that,” said Gillian.
“We will forever be grateful for all their support during the last few years of Fin’s life.
“Thank you CHAS.”
To find out more about CHAS go to their website.
Charlie House
Snuggled up on her mum’s lap, little Ellie Sievewright’s beautiful bluey, green eyes light up as her doting big brother Cameron sings her a soothing lullabye.
Four-year-old Ellie’s gorgeous smile hides the fact that she has been through more than most adults will ever go through in their lifetime.
Born prematurely by emergency section at just 32 weeks and six days with a condition Haemolytic disease of the newborn, tiny Ellie’s heart stopped beating two days later.
Against all the odds, Ellie fought back and continued to battle on through multiple organ failure, a perforated bowel and two bleeds on her brain.
After three months spent in Aberdeen Royal Infirmary’s Neonatal Unit, Ellie was finally allowed to go home to Mulben, near Keith, with her doting parents Vicki and Mark and her beloved seven-year-old brother Cameron.
For the family though, that was just the beginning of a “rollercoaster” journey with their precious girl, who has since been diagnosed with both cerebral palsy and epilepsy and has spent more time in hospital after suffering from seizures.
Through it all, the love and support shown to them by their family and friends has never wavered.
But one person in particular has made a huge impact on the Sievewright family.
That person is Leigh Ryrie, the children and family support manager at the Aberdeen children’s charity Charlie House.
“When we got to referred to Charlie House I was really struggling,” said Vicki, 32.
“I had been on survival mode for a long time so whatever came along I just dealt with it and faced it.
“But when everything was calm I was always waiting for the next thing to happen and I think that made me on edge and I broke down a wee bit, it just got too much.
“Leigh helped me to realise that I didn’t have to be superwoman all the time and that there was help out there for us.”
As well as being a tower of strength to Vicki, Leigh was also there to provide specialist one-to-one support for Cameron, who was left worrying every time Ellie was rushed to hospital after one of her seizures.
“The fact that we had to go off in an ambulance every time was really hard on Cameron,” said Vicki.
“That was one of the things that Leigh helped with as she suggested I got something that Cameron could look after of mine when I had to take Ellie to hospital so he knew that we were coming back again.
“So I have a teddy bear and Cameron has a teddy bear.
“Cameron looks after my teddy bear when I go to hospital with Ellie and I take his one with us to the hospital.
“Leigh knew how much we were struggling with that so it’s been really helpful, especially as Cameron wasn’t able to visit Ellie in hospital due to the Covid restrictions.”
Supporting the family as a whole, Leigh and the team at Charlie House not only provide one-to-one practical and emotional support but they also organise days out so that families can come together and share their experiences.
Cameron, who loves tractors, has been an incredible support to his mum, helping out with Ellie’s medication and looking out for changes in his sister’s breathing that signals she is about to have a seizure.
Having Leigh to talk to and share his worries has been an immense support to Cameron, who showed his gratitude by raising £377 for the charity by completing a five-mile walk.
“Leigh is amazing,” said Cameron.
“She’s funny, she makes me laugh, she’s really good.
“Leigh gave me a ‘worry monster toy’ so that when I have worries, I write them down on a little piece of paper and put it in its tummy.
“Then you can see how many worries are in there and by morning they’re gone.
“It’s my favourite toy.”
Charming everyone with her endlessly long lashes and infectious smile, Ellie continues to light up every room she enters and loves nothing more than being tickled and listening to music.
Her daughter’s fighting spirit is the inspiration behind Vicki’s Facebook blog “Our Unexpected Journey”.
“I was worried that the blog might come across that I was looking for attention but that wasn’t what I wanted.
“It’s about highlighting what’s happening in case it helps someone else.”
For more information about Charlie House go to their website or go to Vicki’s Facebook page.
Highland Hospice
Spending Christmas Day in a hospice is something most of us would assume to be a heartbreaking experience.
But for Fiona Kennedy and her family, that special day with their mum Susan Reid in the Highland Hospice is a special memory they will cherish forever.
Diagnosed with motor neurone disease (MND), the rapidly progressing terminal illness, Susan spent the last nine months of her life being cared for at the Inverness hospice before she passed away peacefully in May 2018, aged 70.
Although it was a devastating time, the incredible support that Susan and her family received from the hospice is something they will be eternally grateful for.
Susan’s daughter Fiona says everyone in the hospice was amazing, but particularly Marion Irving, the hospice cook.
“Marion was just an absolute star,” said Fiona.
“She made it so much easier for us, knowing that mum was in the best of care and she was getting looked after so well.
“Marion made everyone at comfort and at ease and she always had a bit of a laugh and a bit of a joke, she was such a cheery, lovely person.
“She’s a wonderful lady.”
The job title hospice cook does not do Marion justice as she has spent the last 16 years going above and beyond for the patients who visit the hospice.
Due to the effect of MND, Susan struggled to swallow and would often choke on her food.
But Marion was always there to ensure she could eat.
“Nothing was a problem to Marion,” said Fiona.
“Due to the MND there were certain foods that my mum would struggle to eat because she would choke on her food.
“But Marion would always come in and she would find something that mum could eat, she was absolutely amazing.”
From birthday parties to Strictly Come Dancing nights, Susan loved nothing more than enjoying precious moments in the hospice with her family, including her husband Jim, daughter Fiona and her husband David and their children Sophie and Duncan, and her son Andrew and his wife Laura and their kids Ailsa and Jessica.
“My mum actually turned 70 when she was in the hospice so we had an afternoon tea there and all our family and friends came into the hospice on the day of her birthday, it was lovely.
“Marion was fantastic at organising it all.”
The memory that stands out for Fiona and her family is the last Christmas they spent with their mum.
“The last Christmas that we had in the hospice, we were talking about getting mum home even just for a few hours, but Marion the cook and the nurses said that we could all come into the hospice and have Christmas in the hospice,” said Fiona.
“One of the rooms at the back has a kitchen so we had mum’s final Christmas there and it was out of this world, it was just fantastic.
“I remember my mum saying all the staff in the hospice were like angels.”
For more information about the Highland Hospice go to their website.
