By Chiara Pollock,Isla Storie

Copyright dailyrecord

The parents of a baby boy who died at only three months old have thanked the staff in the hospital and hospice who gave him “extra life” in his final moments. Danielle Raynham and her fiancé Ryan Kelly welcomed Charlie on November 29, 2024 at St John’s Hospital in Livingston . However, the new family was quickly separated after it was noticed Charlie was struggling to breathe, and he was put on a ventilator. He was later diagnosed with a rare genetic condition , which required an extensive stay in hospital before being transferred to end-of-life care. However, the couple could not praise the staff who looked after him enough, calling them “angels on earth”. Danielle told our sister title Glasgow Live : “They are just incredible. They are like family now, we can’t thank them enough for the love and compassion they showed our family. They gave Charlie extra life, the whole process was unbelievable.” She described the period after Charlie’s birth as “quite traumatic”, as they had to wait five hours before seeing him for the first time while he was whisked to the Neonatal Intensive Care Unit (NICU). They were informed he was “not breathing well”, and that he would need to be transferred to the Royal Hospital for Children in Glasgow . He was taken by ambulance with Ryan following behind, and Danielle – who was recovering from a caesarean – joining them the following day. At only nine days old, he underwent open-heart surgery , an operation known as Pulmonary Artery Banding, which marked the start of the family’s 97-day hospital stay, during which they stayed in Crossbasket House. It was understood something was “genetically wrong” with the youngster, but it took medics several weeks to reach a confirmed diagnosis . When he was six weeks old, they finally diagnosed him with Smith-Lemli-Opitz Syndrome (SLOS), a genetic condition which affects the body’s production of cholesterol, which is crucial for normal growth and development. Children with the disorder can face serious health problems from birth, and for many, like Charlie, it is life-limiting. He was fitted with a tracheostomy , giving him a direct airway to his windpipe via a tube in his neck, which provided him with long-term ventilation. This allowed the family to take a break from being in his hospital room and go on walks with him in his pram, or enjoy a film at the in-hospital cinema. Danielle added that NICU staff and consultants “made this possible”, meaning the family could enjoy precious time in their “little bubble”. Despite the challenging period, they made memories which will stay with them forever. The most special, however, was when Ryan got down on one knee with his son by his side to propose . Danielle recalled: “The nurses and consultants went above and beyond to get Charlie outside so Ryan could propose to me on the hospital grounds. They organised a photographer as well for the special moment, surrounded by staff and family.” Charlie was meant to undergo a second operation on his heart, but various issues as well as his low body weight made it too risky a prospect. On February 7, the couple were told the heartbreaking news he was now entering the end of life. Four weeks later, they decided to take him to Robin House Children’s Hospice in Balloch, where he would spend his last days. Doctors had told them he may only be alive for “minutes or hours” after being taken off his ventilator. However, he fought for close to four weeks, during which time they made lasting memories. Danielle said staff made “everything possible”, including taking Charlie swimming, which he found relaxing. During their stay at Robin House, they were left hugely distressed following a visit to Duck Bay Marina Hotel in Loch Lomond, after being told they could not use a socket for Charlie’s nebuliser. Local people rallied around the family, supporting them with offers of help and well-wishes, which they hugely appreciated. Overnight on March 21, Charlie’s breathing changed. From that moment, Danielle and Ryan closely watched their baby boy, making the most of his cuddles and enjoying time as a family . At 1.03am on March 24, he passed away while lying on his mum’s chest. He had “touched the lives of many”, including staff from the hospital, with NICU consultants and nurses coming to his funeral . The couple shared their story with Glasgow Live during NICU Awareness Month. They said: “We will never be able to thank the incredible NICU team for the care, love, and compassion they showed our family. “When we were told we were at the end of life for Charlie, everyone went above and beyond to give us precious moments together. When we thought it wouldn’t be possible, everyone came together and got our boy outside for the first time which was incredible. “Everyone gave us that chance to make special memories that we will carry with us forever. Thank you for treating us like family and for making sure Charlie’s short time was filled with so so much love. They didn’t just provide medical and emotional care for Charlie, but also kindness, understanding, and comfort for us. “We will never ever forget any of you”. Danielle and Ryan, with their friends and family, have since raised thousands for Children’s Hospices Across Scotland (CHAS), and continue to support the wonderful staff who were there for them during such a challenging time.