Russel was born in June 2019 a healthy little boy. As time passed, we noticed Russel was a not as active with his movements and was floppy compared to other babies his age. He was referred locally in October 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 Treliske whilst we were out for the day. After examination and monitoring, the Specialists made the decision to intubate Russel and Transport him via the WATCH team to Bristol Royal Hospital for Children. 

After arriving at Bristol Royal Hospital for Children, Russel was admitted to the Paediatric Intensive Care Unit (PICU) where the team of Specialists treated Russel 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. The consultant informed us that Russel had SMA ( Spinal Muscular Atrophy) Type 1. If you would like to learn more about the condition, please click the following link.

 https://smauk.org.uk/sma-type-1-information

Due to the diagnosis Russel’s future was unknown and we were faced with the unimaginable. 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.

Over a course of 10 weeks Russel received 24 hour care and a range of treatments including, 3 lumbar punctures of Nusinersen, chest physio, 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 27^th 2020 Russel had made enough progress to return home. We were now faced with a new 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.

Little did we know we would need to use the life support skills so soon! Unfortunately after being home for less than 48 hours, Russel took a turn for the worse. We acted immediately and quickly realised that Russel had developed another collapsed lung, later finding out he had picked up another virus. After another traumatic experience we found ourselves back in Bristol on the PICU ward, starting our journey all over again. 

Consultants were hopeful that Russel would recover quickly, however due to the strain of the virus Russel’s progress was much slower than previously. Dan and I 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, Russel improved but we had lots of unanswered questions that we couldn’t get to the bottom of. Russel faced more infections which resulted in set backs 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.

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.

Although we were going through an extremely difficult time, the Grand Appeal Charity created a happy environment for Russel and Support for our whole family. 

In Russel’s honour we are aiming to replicate his strength, perseverance 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! 

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. 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.