A mum and dad have spoken out about how their child died aged just 68 days after being diagnosed with a rare condition.
Beauden Turnbull, from Newcastle, died in May last year less than 10 weeks after he was delivered, the ChronicleLive reports.
Following Beauden's birth, parents Richard and Magda Turnbull found out Beauden had Congenital Myotonic Dystrophy (CDM).
They are now speaking about about their loss to 'keep his name and story alive' and to raise £50,000 for Newcastle Hospitals Charity and Tiny Lives Trust.
Richard and Magda - who both work in the NHS - commemorated his birthday on February 25 by presenting staff at the Royal Victoria Infirmary's Neo-natal Intensive Care Unit (NICU) with a map of the night sky showing the star they had dedicated to hospital staff.
Richard, who works for Health Education England, told ChronicleLive the family wanted to do whatever they could to preserve Beauden's memory after he died aged just 68 days.
They have also set up a charitable fund - the Beauden Brave Fund - and are aiming to raise £50,000 in 2022 to split between Newcastle Hospitals Charity and Tiny Lives Trust.
Richard said: "All along, just until Beauden was born, we thought we were experiencing a normal pregnancy. At the six-week scan, everything was normal. At the 12-week scan, everything was normal. At the 20-week scan, everything was normal."
But this wasn't to be the case, and days before Beauden was born the couple went to the RVI - "because something didn't seem quite right" and Magda was experiencing earlier than expected labour signs.
"We just thought we would be checked over and sent home, but that wasn't the case," Richard said.
In hospital, medics realised something was wrong, and after Beauden was born he was diagnosed with CDM - a rare condition affecting the muscles and infant development.
The condition has huge variations in severity, and after Beauden's diagnosis, doctors determined that mum Magda and other members of the family had the condition without having realised.
Richard continued: "There was always a hope that he was going to get somewhere where he'd be able to have some quality of life. But that wasn't the case and he went down hill quite fast in the last week."
Despite their heartbreak, Richard and Magda wanted to make sure to give back to the hospital staff and the charities who had supported them.
After friends named a star after Beauden himself, Richard and Magda decided to name one the "NICU Night Light" and dedicate it to the staff at the RVI.
Richard said: "One of the reasons we dedicated a star was because of how the staff gave Beauden a home. Despite there being nothing that could have been done about the outcome, the quality of care we experienced was incredible even through difficult circumstances.
"Because he was here for such a short time, it means a lot that his name will live on. And because the staff were so wonderful we thought we would have one dedicated to them.
"The staff were always incredible with us. I just think of all the things they did for us in that hard, hard time. They created a space for us and for Beauden, and allowed some of his extended family - great grandparents, aunts and uncles - who were so grateful to meet him for the first time."
He said hospital chaplain Katie Watson - who has since starred in Geordie Hospital on TV - had even performed a naming service for Beauden.
Richard said he hoped that the star - and presenting an image of it in the night sky which will be displayed on the ward at the RVI where Beauden stayed - would "hopefully keep people talking about Beauden's name".
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Magda, an NHS physiotherapist, added: "We wanted to show how grateful we are to the staff on the unit who cared so lovingly for Beauden and gave him a home for his time here."
After Beauden's death, with the help of family and friends, the couple were able to raise around £30,000 for the Tiny Lives Trust charity - which helps children who are ill in hospital and their families.
Richard said: "The support from the Tiny Lives Trust was amazing. It's such a good example of a charity which makes an amazing difference.
"The things they do, having the parent's lounge for example, are incredible.
"The two drivers behind the fundraising are to give back to the causes that supported us and also that it's another way of keeping Beauden's name and his story in the present."
He said he and Magda would be "forever grateful" to the charity for their care during an incredibly difficult time.
