In June of 2016 Stella was taken to hospital for the final time, we lived at the hospital on the High Dependency ward with her for nearly 2 weeks but this time she was not able to fight off the pneumonia and she died on the 12th of July 2016.

 

It was during these last 2 weeks (that felt more like months) that we came into contact with the charity Well Child for the first time. They had just funded a Paediatric Complex Needs Nurse, whose job it is to act as a liaison between patients’ parents and the numerous doctors and medical staff that surround a child with complex needs.

 

It is hard to describe the impact that our wonderful nurse Michelle had on our journey, but it is safe to say it was immense. She was there for us throughout our darkest days, as I vented my frustrations at the intensivists who didn’t want to intubate Stella and as we endured numerous 'prepare yourself for the worst' chats with consultants, she supplied coffee, tissues, hugs and advice.

 

Ultimately she was there on Stella's last morning, it was Michelle who let me know that Stella had taken her last breath just after I kissed her forehead and told her that I loved her, it was such a blur I did not realise that at the time and that means the world to me.

 

It was Michelle who arranged for the wonderful team at Children's Hospice South West to come and collect us, she arranged for me to carry her all the way to the hospice in my arms to lay her to rest in the Starborn room.

 

She visited us in the days to come, attended Stella's funeral and personally introduced me to an amazing counsellor from Treliske who helped me navigate through the fog of grief. She treated Stella and our whole family with grace and dignity and is someone I will call a friend for the rest of my life.

 

I am running the marathon in honour of Stella, Michelle and all the other amazing NHS staff who treated her, each step of the way I will hold you all in my heart.