Family back CHAS campaign following death of Benji, seven

Alex Davey phoned staff at CHAS (Children’s Hospices Across Scotland) while the rest of the family slept after seven-year-old Benjamin Davey, who had a number of health conditions, died at Edinburgh’s Royal Hospital for Sick Children in 2021.

The family, from Dunbar, are now backing the charity’s festive campaign, which aims to secure much-needed donations that will give the gift of time and precious memories to the families of dying children.

Alex, who was already mum to Jackie when she had Benji, was full of praise for CHAS and said: “I ended up calling the hospice care team the night Benji died, while the rest of the family were sleeping, and talking to them until 4am in the morning as I just couldn’t sleep.

“I just felt I needed to talk to someone who would understand what I was going through.

“They were brilliant, patient, kind and just listened to me, which was what I needed at that time, and I will never forget that amazing support – it meant so much to me.

“CHAS also offered us all bereavement support as a family and the girls were invited to enjoy activities with other siblings.

“We remain very connected to Rachel House to this day and recently took part in the charity’s memory walk.

“The girls also made a letter for the CHAS Alphabet and loved going back to the hospice to be presented with their letters in a special frame.

“The girls actually used to say to me ‘Mummy, we are so lucky we’ve got Benji as it means we can go to Rachel House’, so any chance they get to go back to visit, they love it, even now.”

Benjamin Davey died when he was only seven years old (Image: CHAS)

Just a few weeks before Benji was born in November 2013, the family were given the devastating news that his brain had not developed properly in the womb and he was not expected to survive birth.

Despite everything having appeared ‘normal’ in previous scans, an MRI scan at the Edinburgh hospital confirmed that Benji had a rare condition called lissencephaly, where the brain appears smooth instead of having normal bumps and folds.

Alex, who works as a deputy director of science at the Botanic Gardens in Edinburgh, recalled her son's birth.

Benji and family in Rachel House pool (Image: CHAS)

She said: “Because he wasn’t expected to live for very long, he wasn’t whisked away for tests or monitoring or anything like that.

“So I was able to just hold him and cuddle him straight away.

“We as a family just felt so happy to have him for as long as he was able to stay with us – we knew every moment was a blessing.”

After a week staying in hospital, both mum and baby were allowed to go home and, for the first 18 months, things were relatively stable.

Alex said: “Because he was developmentally delayed, Benji wasn’t able to meet all the typical milestones such as sitting up, rolling over, walking, talking or anything like that but we were still able to feed him normally during this time and he was a happy little boy who always had the biggest smile that could light up any room.”

Unfortunately, when he was just 18 months old, Benji suffered a significant seizure.

This, along with continuing reflux issues that were affecting his lungs, meant he needed to begin being fed by a tube.

Benji and sisters having fun at Rachel House (Image: CHAS)

Alex became aware of CHAS when Benji was two years old shortly before she was due to give birth to her third child, Caitlin.

She said: “We stayed at Rachel House for a weekend before Caitlin was born and loved everything about it.

“We were pleasantly surprised to find out just how much is offered there, not just for the referred child but the whole family.

“We continued to have respite visits at the hospice, which were always wonderful.

“When we were there, we didn’t have to worry about all the usual responsibilities like when Benji’s next feed was due or cleaning syringes, we could all just be together as a family and cuddle Benji, watch TV with him or sit in the garden with him.

“The girls always felt so at home at Rachel House and absolutely loved all the activities like the arts and crafts.

“They also liked spending time in the gardens and going on the bikes and the tractors.

“We all loved going in the Jacuzzi as a family, especially Benji.

“Benji also liked the sensory room and really enjoyed the pamper sessions the staff at Rachel House would give him – they would massage his hands and feet, and he just loved it as it would totally relax him and make him smile.”

Benjamin Davey with his mum Alex (Image: CHAS)

Alex described how affectionate Benji was and told the Courier how he “absolutely loved his cuddles”.

She added: “Even though his little arms didn’t work as they should have, he would still put his hands up for a hug.

“The girls loved lying with him in his bed and just being together – they were all really close, especially Jackie with her being older.

“Whenever she was down she would go to Benji and just cuddle him, and she misses doing that so much.

“Although we were told he was developmentally delayed, we felt Benji was smart in so many ways.

“He would always know when it was me who came in the front door and at school they were teaching him the alphabet and other things through his Eyegaze device and he seemed to be understanding a lot of it.”

Unfortunately, as time went on, Benji – who attended The Hub at Sanderson’s Wynd Primary School, Tranent – saw his chest infections increase and he became prone to more and more infections that would lead to him having to spend time in hospital.

By late 2021, when Benji was seven, his medical team in Edinburgh called Alex and Richard to say they did not think he would survive many more infections.

Benji Davey with his parents Alex and Richard, and sisters Jackie and Caitlin (Image: CHAS)

Alex recalled how her son’s death happened “very quickly” and, after becoming unwell on the Thursday afternoon, he passed away the following day.

She added: “Our beautiful boy obviously just decided it was time for him to go.

“It was devastating but the staff were absolutely amazing.

“I was able to lay on the bed with him when he took his final breath.

"Richard and the girls arrived shortly after and, even though there were Covid restrictions in place, we were all allowed to lie on the bed and cuddle together.”

READ MORE: Tributes after death of Dunbar seven-year-old Benjamin Davey

Despite Benji’s death, the family have retained a connection to the charity and Rachel House, which is near Perth.

Alex said: "Benji taught us so much about the world and also about prejudice.

"He inspired me to support other children like him and their families, so I now do a lot of work with kids with additional support needs in our local community.

"I help with campaigns to make playparks and toilets more accessible, and anything else that needs awareness raised about it.

“When we think of Benji, we remember him only with happiness and love.

"We have so many wonderful memories and we feel so incredibly privileged to have had seven years with him after being told we might not even get one day.

“We just feel so grateful for the time we had with him and the privilege of having him in our lives.

"And we will always be grateful to CHAS and to Rachel House for helping us make such precious memories together that we will treasure forever.”

Three children across Scotland die of incurable conditions each week.

The charity is determined to reach every single child who needs its help through the CHAS Christmas Appeal, which includes a radio advert and television advert depicting the heartbreak faced by families whose children die young.

Iain McAndrew, director of income generation and engagement, fundraising and communications at CHAS, said: “We know that the number of children living with life-shortening conditions is increasing, as is the demand for our services.

"CHAS is determined to ensure that as many families as possible enjoy precious time together filled with happiness and joy this Christmas.

“We are committed to continuing to provide unwavering support to children and families right across Scotland from the point of diagnosis right through to bereavement, but this would not be possible without our generous supporters who give love and strength to those in the greatest need.

“This is why we are appealing to the kindness of the Scottish public to donate what they can this Christmas to help us ensure that no one has to face the death of their child alone.”

For more information, go to chas.org.uk/appeal