Elliott rushed into this world on July 14th, fighting for every breath; little did we know that this was to be just the start of his battle. Yes, Elliott being our second son, had big brother Daniel to contend with! The two clearly adored each other; but life was not without moments when Daniel was struggling to get used to Elliott’s presence, and Elliott was enduring Daniels prodding.

It was with much joy we introduced Elliott to his grandparents, uncles, aunties and cousins; and for us all, watching Daniel interact with his little brother are treasured memories. Elliott quickly became part of our little family and was included in visits to the park, museum, the swimming pool and coffee shops. In fact, Elliott and Mummy were quiet inseparable and he himself attended 2 parties, 2 weddings and 2 funerals in just the space of a few months, which meant many of the extended family and friends also had the chance of a cuddle. With tremendous pride, Daniel and Elliott were taken to visit 6 churches the family have connections with and our newly enlarged family felt so blessed. Our last family outing was to Birdworld during October half term, the first time the boys had seen so many different animals – Daniel’s favourite were the crocodiles, of course. The trip has everlasting happy memories, but they will always be intermingled with sickening worry, for it was this day that we received a phonecall from Elliott’s paediatrician that asked us to bring him in urgently for some tests and outlined their concerns.

Like all new parents, we had spent a long time thinking about the boys’ future together, however on the November 5th, when Elliott was only 16 weeks old we received the devastating confirmation that he had a rare inherited neuromuscular condition called Spinal Muscular Atrophy (SMA) that would be severely life-limiting. The information we received on the day of diagnosis and in the days following was unbearably hard to hear but essential for us to begin to plan for how we might make the most of Elliott’s precious time with us.

Just a few days later on November 13th, Elliott was admitted to the John Radcliffe Hospital after he picked up a mild cold. He was looked after by nursing staff on Drayson Ward; but quickly deteriorated due to his weak lungs and was transferred to the paediatric high dependency unit the following evening. Overnight, plans were made to transfer Elliott to Helen & Douglas House Children’s Hospice - but due to his frailty, we were advised that he may not survive the move. Robert baptised Elliott in the early hours of Sunday morning and all his immediate family came to be with him. Following this, Elliott’s strength was renewed, and no fewer than 15 members of family shared that Sunday afternoon with him at the hospice, creating a wonderful feeling of love and support.

Over the next 17 days Elliott’s comfort and care was looked after by the amazing team at Helen House 24 hours a day. We were given 2 of their 8 bedrooms: meaning that Vanessa could sleep by Elliott’s cotside and John and Daniel also had a family flat just a few steps away. Elliott’s physical strength was weak, but his personality and mind remained that of a 4 month old - and being at Helen House gave us the best possible surroundings to continue with family life during his good moments. We built special memories: making hand and foot prints, playing with toys, being visited by Father Christmas, with sensory play and at bath times. We had many visitors, who were always welcome and often fed and cared for too. There were also opportunities for specialist counselling, play therapy for Daniel, and at other times just the opportunity to chat.

Elliott had amazing inner strength, he faced every situation with quiet determination, he cried only when every other option had been tried. Elliott had the ability to look at you and to be able to speak straight into your soul, and when he was smiling he smiled not just with his mouth but with his eyes too. His doctors were repeatedly amazed every day at his strength and resilience and there are two comments from them that will remain with us always: “the intensity with which he will seek out and hold your gaze is incredible” and “there is a ripple going round HDU that Elliott is special”. We of course knew this already, but it was humbling to hear others remark on it too, and fitting with the meaning of Elliott’s name: The Lord is good!

In Elliott’s final days his sparkle was replaced with tiny looks of sadness. These were the hardest moments; for whilst we knew he was in no pain, his look said to us “I can’t fight much more” and as parents, all we wanted to do was to be able to take his place. When every breath Elliott took became a struggle, we were astounded that he held on for as long as he did. Throughout this journey, our wish was to have no regrets and Elliott helped us with this by sharing his final moment with us. The hustle and bustle of the day had quietened down, Daniel was asleep, we were each holding Elliott’s hand and with his last breathe, he pulled both our hands towards his heart.

Elliott gave us great joy every single day, he may not have been able to move much or say anything, but he had personality beyond compare. He connected with every person he ever met, reaching into their soul with a look, comforting them with a squeeze of the hand. He was our beautiful son, grandson, brother, nephew and cousin and we all loved him from the deepest reaches of our hearts. His time in this world was brief but Elliott has left us with a lifetime of love and memories. We are far richer for his presence in this world. He will be missed, but when we think of him we will remember him with gladness, for we were privileged to been entrusted with him for his short life. Elliott you are our beautiful baby boy and always will be. We love you, from Mummy and Daddy.