Lanarkshire couple's baby joy and marriage proposal after daughter died in her mummy's arms

For Lanarkshire dad Jamie McMillan, there could be no more meaningful place at which to propose to the mum of his three children than by the graveside of their middle child, with their new-born baby and her big sister by their side.

On April 14 the day after Ainslidh Stevenson gave birth to baby Aria McMillan, who weighed in at 6lb 12oz at University Hospital Wishaw she and partner Jamie took their new-born and five-year-old daughter, Olivia, to the resting place of little Amelia, who tragically lost her life in 2022 to a rare genetic disorder at the age of only 15 months.

When visiting Phillipshill Cemetery, East Kilbride only four days after what would have been Amelia's third birthday Ainslidh found by her little girl's headstone what she assumed to be a touching birthday gift left by a friend.

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On unwrapping the parcel, she found a babygro, bearing the message: 'Mummy, will you marry my Daddy?'

"I saw the writing," said Ainslidh. "I turned round, and Jamie was on one knee. I didn't see it coming. Olivia understood what he had done. She said: 'That means you're going to get married.'"

Among the first people to learn of the couple's happy news was Reverend Amanda Reid, the chaplain at CHAS's Robin House the children's hospice in Balloch where the family made special memories together, and where Amelia took her last breath in her mum's arms.

On hearing of their engagement, Amanda who helped Ainslidh and Jamie put plans in place for Amelia's funeral immediately offered to perform their marriage ceremony.

The family's association with CHAS, which Ainslidh describes as "a bond we will always have," began after doctors at Glasgow's Royal Hospital for Children diagnosed Amelia with mitochondrial disease the term given to a group of genetic medical disorders caused by mutations in mitochondria, the tiny organelles that are present in nearly every cell in our bodies and which generate the energy we need to live.

In December 2021, DNA taken from both parents revealed they each had the same faulty Bola 3 gene.

Just two days before Christmas, they were informed Amelia had the 'ultra rare' mitochondrial dysfunction syndrome 2, meaning she would die before her second birthday.

"I held Amelia and cried the whole day," said Ainslidh, of St Leonards, East Kilbride. "Our whole world had been ripped apart in such a short space of time."

"It was a complete rollercoaster of emotions, as we were told so many different things because Amelia's medical problems were so complex. We were also referred to Ronald McDonald House so we could be close to the hospital, which was so helpful and made a big difference."

It was during one of Amelia's stays in hospital in 2022 that the family were told about CHAS and asked if they would like to be referred to the charity. Said Ainslidh: "Initially we brushed it off, as we didn't feel we needed any help."

"But then in May, Amelia developed encephalitis inflammation around the brain. She started having seizures and we were exhausted dealing with all her medicines and feeding."

"So, when CHAS was mentioned again, we said yes and, in July 2022, we went for a visit to Robin House."

"We didn't really know what to expect and were a bit anxious about leaving Amelia with people we didn't know, but as soon as we spoke to the staff in Robin House, we just knew instinctively that we could trust them. They instantly put us at ease and I knew they were going to do their best for Amelia."

"Olivia was with us too and staff told us we could go out for the day with her if we wanted and they would look after Amelia."

"I was a bit apprehensive at first because I was so used to doing Amelia's feeds and knew exactly how everything should be done, but the team reassured us someone would be with her all the time, so we took Olivia to the local Sea Life centre."

"It was a really great day out and it was so important for us to get some time with Olivia."

The family even enjoyed time together in the hydro pool at Robin House something they would never have been able to do at their local swimming pool.

Those few days in Robin House gave Ainslidh and Jamie time and space to simply be Amelia's parents, and not her carers.

They could relax and enjoy time alone with Olivia and also do everyday, family activities with both their children that before had seemed impossible.

Those memories and that time became even more precious as, not long after her stay in Robin House, Amelia's health deteriorated and the couple were told she didn't have long left to live.

"We thought Amelia had a chest infection and she was taken into hospital," recalls Ainslidh. "But then the world crashed around us when we were told in intensive care that it wasn't a chest infection, but that Amelia's body was shutting down and she was going to die."

"They asked us where we would like Amelia to die. We'd always said we wanted her to be at home but, in that moment, we just knew we should go to Robin House."

The family were taken by ambulance to the hospice and decided to stay in one room together. Staff made sure they were comfortable and Ainslidh snuggled up in bed with her beloved baby girl.

With her family around her and lying safe in her mum's arms, Amelia who was affectionately named 'little brown mouse' because of her love for book, 'The Gruffalo' passed away on July 29, 2022.

Said Ainslidh: "It was so peaceful. We were all with her. If we did have to lose Amelia then it really was the perfect end."

Staff at Robin House helped the family navigate the days following Amelia's death, and arranged for her parents to take part in memory-making, and casts of Amelia's hands and feet were made.

Amelia stayed in the hospice's Rainbow Room, a special temperature-controlled space that allows families to have time with their child after they have passed.

They gave Amelia a bath, dressed her in a sleep suit and walked her around the grounds of Robin House in the sunshine.

"I'm so thankful for the time we had with Amelia after she had gone," said her mum. "The staff were just amazing and played lullabies and read her stories."

"It might sound silly because I knew she was gone, but it was so important for me to know that she was still being looked after and cared for."

Following the loss of Amelia, Ainslidh sought support from charity The Lily Foundation, which was founded in 2007 by Liz Curtis in memory of her daughter Lily, who died from mitochondrial disease at the age of eight months.

Although Ainslidh knew that Amelia's complex health condition was unrelated to pregnancy, she had bouts of anxiety while carrying Aria, getting "worked up and over-thinking" any sense of reduced movements.

Ten weeks into the pregnancy, she had chorionic villus sampling (CVS) a pre-natal test for chromosomal abnormalities and other genetic problems in the fetus.

Within a week, results revealed that like her parents and sister Olivia, Aria is a carrier of the faulty gene but will not go on to develop the rare disorder that claimed Amelia's life.

Ainslidh continued: "Olivia was amazing with Amelia. When Amelia got unwell, she continued to be amazing. I knew that when the baby arrived, she would take it back on. Since Aria came, she's never been away from her."

"She will talk to Aria about Amelia. She's very blunt. She said: 'Amelia is very important because she is dead. She is special to the family. She is important, but she isn't here.'"

"She is that doting big sister. She will say: 'There are five of us in this family Mummy and Daddy, me, Amelia and Aria.' We have never left Amelia out when we are talking."

Now with a thriving month-old baby and a wedding to plan, Ainslidh and Jamie were humbled to be asked to front CHAS's new fundraising campaign, 'Every Single Step' an appeal that illustrates how families are supported at every single stage of a child's palliative care journey.

Said Ainslidh: "CHAS gave us something no-one else could they gave us time with Amelia before and after she died. We got to make memories with her and be a family."

"We'll forever be grateful to CHAS and will always treasure the time we had with our 'little brown mouse.' That special connection with CHAS means a such a lot. It's a bond we will always have."

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* Since the loss of Amelia, the family have kept in contact with CHAS, attended its Memory Walk events, and have raised money for the charity at The Kiltwalk.

To make a donation in Amelia's memory, visit: www.justgiving.com/fundraising/Amelia-McMillan1

* Children's Hospices Across Scotland (CHAS) has published a new strategic plan which pledges to provide pivotal support to families of dying children at each critical stage of their palliative care journey.

The Unwavering Care 2024-2028 Strategy was developed following in-depth consultation and feedback from more than 135 families and from stakeholders.

It sets out how no family ever has to face the death of their child alone, with CHAS providing support from the moment of diagnosis, to helping the child live well and by supporting the family after a child's death.

Its new fundraising campaign, the 'Every Single Step' appeal, is helping to raise the funds necessary to enable the plan.

Rami Okasha, CEO of CHAS, said: "Three children a week die in Scotland from an incurable condition. Our strategic plan sets out how we will provide unwavering care to children who may die young and their families, at every step on this hardest of journeys."

"Families told us there are three critical stages where they need CHAS: when they learn their child is seriously ill and may die young, helping their child to live well and also helping them to die well with ongoing bereavement support."

"Our strategic plan is centred on these critical stages and what we will do to build upon the exceptional work we already do in these areas."

"Over the next four years, we will concentrate our efforts where we can have the most impact. Our nurses, doctors, and family support specialists will work across hospices, children's homes and hospitals, providing tailored care for families in the places that suit them."

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"We will continue to work with our wide range of partners including the NHS, councils, hospices, charities, government and our dedicated volunteers."

"Together, Scotland can deliver world class care when needed most through the tough days of diagnosis, throughout a child's life, at end-of-life, and after a child dies."

"To do this effectively, however, we need the continued support of the generous Scottish public. Every donation made to our Every Single Step appeal will make a real difference to the children and families we support nationwide."

Donations can be made at www.chas.org.uk/donate or by calling 0141 779 6180.