Cornwall news Heaven gains a 'little angel' as baby boy dies from rare condition UK news

MetiNews.Com - Life was perfect until they realised something was wrong with their baby boy

Cornwall news Heaven gains a 'little angel' as baby boy dies from rare condition UK news

MetiNews.Com - Life was perfect until they realised something was wrong with their baby boy

Cornwall news  Heaven gains a 'little angel' as baby boy dies from rare condition UK news
02 August 2020 - 13:56

Breaking News ! A couple from Cornwall have spoken of their heartbreak following the death of their beautiful baby boy. When baby Russel was just five months old, Lerryn Wade, and her husband Dan Wade, both 29, received the devastating diagnosis that their son had spinal muscular atrophy (SMA) type 1 – often referred to as ‘floppy baby syndrome’. SMA is a rare, genetically inherited neuromuscular condition. It causes progressive muscle weakness and loss of movement due to muscle wasting. It is the top genetic killer of infants under two. The couple, who live in the St Austell area, sadly lost Russel in March of this year and have described how their previously healthy baby became “more floppy than usual” when he was two months old. It wasn’t until November 2019 that they finally got a diagnosis. Lerryn said nothing could have prepared them for the news they would receive. “Russel was born a healthy little boy,” said Lerryn. “As time passed, we noticed Russel was not as active with his movements and was floppy compared to other babies his age. “He was referred locally in October last year to our paediatrician where they started investigations. Before we received any results Russel took poorly suddenly in November, during which time he had a chest infection. “He was airlifted to Royal Cornwall Hospital whilst we were out for the day. After examination and monitoring, the specialists made the decision to intubate Russel and transport him to Bristol Royal Hospital for Children. Read More Related Articles Cornwall Live has a free app and here's how to download it Read More Related Articles You can get our best stories sent straight to your inbox with our newsletters “After arriving, Russel was admitted to the Paediatric Intensive Care Unit (PICU) where the team of specialists treated him for collapsed lungs and rhinovirus. After two days we received results from previous tests sent in October. “Nothing could have prepared us for the news we were about to receive. “ Lerryn and Dan said that the diagnosis left them “facing the unimaginable” and that Russel’s future was completely unknown. “The consultants gave us honest and direct information about the challenges that lay ahead. Although we were faced with devastating news, the trial of a new drug called Nusinersen gave us positivity and hope," Lerryn said. “Over a course of ten weeks Russel received 24-hour care and a range of treatments including three lumbar punctures, chest physiotherapy, suctioning, cough assist and general monitoring. He made great progress during this time and remained a happy little boy, brightening up everyone's day.” On January 27th 2020 Russel had made enough progress to return home but the family were now faced with the challenge of supporting Russel at home with his additional needs. “The hospital supported and provided us with training and equipment, which included nasogastric feeding, suctioning, on-going chest physiotherapy, cough assist and basic life support skills as his needs were so complex," Lerryn explained. “Little did we know we would need to use the life support skills so soon.” After being home for less than 48 hours, Russel took a turn for the worse and with another collapsed lung and having contracted yet another virus they found themselves back in Bristol starting the journey all over again. Lerryn said: “Consultants were hopeful that Russel would recover quickly, however due to the strain of the virus Russel’s progress was much slower than previously. We agreed that this time felt different, as Russel was not his usual bubbly self and the treatments were becoming more complex and challenging.” After small steps and further investigations they described how Russel’s condition had improved but there were still lots of unanswered questions that they couldn’t get to the bottom of. She added: “Russel faced more infections which resulted in setbacks and took us back to square one. During this time it was clear that Russel was upset and uncomfortable, he was our little boy and this was extremely difficult to see.

. Generally speaking, the earlier the onset of symptoms the more severe the condition. Babies are unable to sit without support and may be described as ‘non-sitters’. It‘s not possible to predict life expectancy accurately but for most children, without intervention for breathing difficulties, this has previously been estimated as less than two years. Evidence suggests that since the International Standards of Care for SMA (see below) introduced more proactive managements in 2007, children have been living longer. Information taken from Spinal Muscular Atrophy UK. “It was important to us that Russel had a quality of life. After talking to consultants and taking some time to reflect on our situation we realised, ‘yes’ Russel could have a way of life but not the life our special little boy deserved. “He had been through so much already and spent half his life in hospital. We reached a point where we couldn’t put him through the invasive treatments anymore. Russel’s last few days were spent with his family making unforgettable memories that we will treasure forever. “In March 2020, heaven gained our little angel who unfortunately didn’t get the celebration of life that he deserved. “During our time in Bristol, Russel continued to be brave and showed everyone what a true fighter he was. He touched the lives of many, including the amazing team at Bristol Royal Hospital for Children who became part of our family during our journey. “We are extremely grateful for the dedication and kindness of every individual that cared for Russel in the Paediatric Intensive Care Unit (PICU). Lerryn describes Russel as being full of character, saying: “He was a very happy little boy, he had many expressions the nurses would define him as sassy, nosey, wise before his time and almost like he lived a previous life.” “He became a bit of a star on the ward and everyone always wanted to come and meet or see baby Russel as they would say they needed to brighten up their day.” Speaking of the unimaginable decision to let Russel go, she said it was the hardest thing they ever had to do. Read More Related Articles Tributes to much-loved nursery teacher who went 'above and beyond' Read More Related Articles Padstow's favourite busker and the race against time to save his home In Russel’s honour, this September, they are aiming to replicate his strength and determination by climbing and completing the national three peaks. “Russel will be supporting us along the way, giving us the motivation and inspiration that we need. If Russel achieved what he did, we feel that we can do anything," Lerryn said. “So now our journey as bereaved parents begin. One of the things that have given us the strength is the idea of raising money to support the hospital and families who are facing similar challenges, you just never know who will need them next. We never thought it would happen to us. “The Grand Appeal Charity will always be close to our hearts, so any donation no matter how big or small will help us achieve this. “Russel is our little star. His big brown eyes, beaming smile and inquisitive nature brightened up every room. He has left a hole in our home that can never be filled, but will be remembered with smiles and fond memories of the time that we were lucky enough to share with him.” They will be setting off on their challenge on September 25, arriving in Scotland. They will commence the hike on the 26th and hope to complete the challenge in 48 hours. You can support Lerryn and Dan’s quest here.

Source = MetiNews.Com - Cornwall

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Cornwall news Heaven gains a 'little angel' as baby boy dies from rare condition UK news


Cornwall news Heaven gains a 'little angel' as baby boy dies from rare condition UK news


Cornwall news Heaven gains a 'little angel' as baby boy dies from rare condition UK news


Cornwall news Heaven gains a 'little angel' as baby boy dies from rare condition UK news

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