Katie was so very, very special to us and obviously we’ve found out that she was so special to lots of other people as well. Two phrases that crop up time and time again are: She’s special. She’s a star. Katie had an infectious smile and a zest for life. She made an impact on people in a quiet way.

When she was born, her arrival in the world was so precarious, so longed for and when she was born there was such a huge outpouring of love, joy and relief that she’d arrived and in the way that she died, there has been a huge outpouring of grief, loss and shock. And there’s got to be grief. The price of loving someone is grief and Katie was so, so loved that the grief is so, so great.

Katie was bright, beautiful, funny, brave and determined. She loved Uni and had a fantastic year in Canada. She always had a plan, she was always organised, she was hoping to do an MSc, she was hoping to work at JBA again before returning to Uni in January. Katie was so looking forward to watching her beloved Rhinos at Headingley again. She talked about her illness as a setback and that she’d soon be back on track.

One thing we’d like you to do is, if you’re doing something wonderful, when you’re standing on top of a high mountain, or by a waterfall, or if you see a delicate rainbow or an amazing sunset, please share it with Katie. If you’re skiing or swimming, in your head just say I’m doing this for Katie. One of Katie’s friends texted her shortly after she became ill in Norwich. She said: ‘It’s snowing Katie and I’m throwing a snowball just for you’ and that was such a lovely thing to say. Please carry on doing things for Katie. Allan and I and the family always want to talk about Katie, we want to share in your celebrations and children’s successes and we don’t want to feel shut out.

Katie was so very easy to love and live with and it will be unbearably hard to live without her, but in her 22 years, all but one day, she gave us such joy, happiness and laughter and we know we have a fund of wonderful memories to sustain us. If someone had said to us you can’t have Katie or you can have Katie for 22 years, there wouldn’t have been a choice, because we’ve had such a wonderful time together. In the last months of her illness, we’ve had so much time to spend together - Katie called it quality time and we’ve laughed and talked about all kinds of things. She always knew that we’d be with her every step of the way and we were.

Before Katie died, we sat by her, stroked her and held her hand and prayed and prayed for a miracle. I reflected the following day - we didn’t get the miracle and then I suddenly realised that yes, we did. We did get the miracle - the miracle was that Katie was born and she may so easily not have been. So yes it’s an unbearable, cruel thing that has happened but as a family we have plans to make sure that Katie’s name will always be remembered and we ask that you will always remember her.

One of the good things is that Katie always knew from the minute she was born to the minute she died that she was so precious and so, so loved and we knew how much she loved us. We are a close and loving family and Katie had such a special bond with her treasured and beloved Grandma Joan and Grandma Rose.

Katie was a precious gift - we gave her roots and gave her wings. Katie was an inspiration to others and will always be loved beyond words.