Thea Rose Redford Nearest and Dearest, Annabel and I would like to thank everyone for coming today and for all of the cards and messages of support that we have received. The past couple weeks have confirmed what we already knew - that we are extremely lucky to have such wonderful family and friends. We would also like to thank all of the amazing doctors, nurses and carers who have supported us and Thea over the past couple of years. Recently a friend of ours used a particularly lovely turn of phrase. She said; treasured children have many names. And so it was with Thea. Also known as Thea Rose. Thea Boo. Splutterbug. Sausage pie. Goose. Banana. Sweet pea. Chick pea. Tinkle Ponkle. Donkle Ponkle. Ponkle Lonkol Donkol. Pudding. Grubble. Rat bag. Pamplemousse. The queen of Sheeba. Trumpet trousers. Thunderpants and, more often than not, Pickle. Some facts about Thea; she loved trees. She loved the sea. She loved bath time with Bam Bam and chewing on shoulders. She loved brown bears and books. She loved to sing (in her own way). She loved to learn. She loved her Trisha monkey. She loved custard. She loved bubbles. She loved odd socks but not as much as she loved wearing only one sock at a time. She loved to save her most noisy squawks for the moment you’d just left the room to make a cup of tea, when you’d walked into a book shop or were on a train - her timing never amiss. She was devoted to Shooting Stars, raising single handedly somewhere in the region of £15,00 for the charity - although a very small amount of credit might also be given to her Uncle Rich and Athers for actually running the London Marathon and to Alan Curr for walking the entire length of the Thames in under a week. Thea was an adventurer who travelled to Ibiza and to Cornwall and to Sussex often. It’s a lovely thought that today friends and family are lighting candles of remembrance in Spain, India, Japan, Abu Dhabi, Australia, New Zealand, Colombia, the Cayman Islands, Dubai and South Africa. She was wise beyond her years and gave silent counsel to many. Indeed the phrase ‘What Would Thea Do?’ has become something of a family mantra. She was the strongest person I’ve ever had the privilege to meet. And the truest. Thea was with us for 21 months but somehow her life seems to have spanned a much greater period. In many ways it’s impossible to think of life before she was with us. Or indeed life without her. Twenty one months. Every day of which Thea spent in some sort of discomfort. She could not swallow food, or move her limbs with conventional purpose. She could not walk or talk. She spent her one and only birthday in hospital being treated for pneumonia. She suffered endoscopes, NG tubes, intubation, examination, oxygen masks and probes. She spluttered, choked, vomited, gasped. And yet the remarkable thing is, that when we think of Thea we think of an incredibly happy little girl, a vivid, joyous soul. We had to wait almost a full year to see Thea’s first non wind related smile - but WHAT what a smile it was, a smile that could light up a room, that could melt hearts at a hundred paces, a smile that it was impossible not to fall in love with. It was through this smile, and through her beautiful blue eyes that Thea met the world, and part of the reason that she managed to touch so many people’s hearts. In many ways Thea was defined by her inconsistencies, at least from a medical, practical perspective. But one of the magical things about Thea was the consistency of her disposition. She fought with such courage and grace through discomfort, pain sometimes, and through a life that must have posed endless frustrations. And she did so with a smile on her face, and with a determination and fortitude that was wondrous to behold. Over the last year of Thea’s life, she seemed to grow into herself and slowly surpassed the limited expectations associated with her condition. She became more aware, interested in her beloved bricks and her books. She started to laugh at bath time - although she sounded a bit like a dolphin - and she would kick and splash about with great energy. She was able to use a standing frame and tray. She explored different textures and smells. All things that were not expected of her, small victories that might have gone unnoticed in a more typical child, but that were celebrated by us all, having been so well earned. A typical Thea scene was this: she would lie on her back with a toy by her side, around head height so that she could see it. She would stare at the toy and try to move her arm in that direction. She would wiggle and kick but the control required was beyond her. One of us would then take her arm and place her hand on the toy and BANG her face would light up - so happy to have made contact. But that was never enough for Thea. She would continue to stare and sure enough before too long her arm would work its way up independently and give the toy in question a good old swipe. Taking steps in the bath - albeit somewhat assisted - also gave her a great sense of achievement. Thea would slosh along the tub, her face a picture of concentration. Three, four, five steps and then she would flop back into the water. Cue the biggest smile ever. We treasure these moments because they show Thea at her inspiring best. She displayed such pride in being able to achieve these small tasks, things that were, for her, so hard. An idea that keeps coming back to me is that of legacy. I guess at times like this we try to attach meaning to our grief and to the experience of loss. And the thing that stays with me is this: that Thea was demanding. I use that word advisedly and certainly not with regard to the care that she required. Thea demanded more. She demanded better and stronger and happier. She demanded that we fill our hearts with love, that we should not mope or idle but carry onwards and upwards. She taught us all that life’s challenges can and should be met with courage and good humor. She taught us patience, empathy and understanding. She taught us about the enduring nature of the human spirit, she taught us about how precious life really is. It’s well known that Thea loved a snooze. And sometimes when she snoozed she would dream. She would smile as she slept and I would sit and wonder where her imagination might have carried her. I loved the thought of her flying or running, swimming perhaps. I loved the thought that she was somewhere more free, somewhere without pain and struggle, without feeding tubes and vanilla milk. As life goes on I know that we will all carry forward the memory of Thea in our hearts and I hope that her spirit has found peace, perhaps the place she always dreamed of. We miss Thea terribly. The pain of loosing her is still so fresh and so hard to bear. But we continue as Thea would want us to - with courage and energy and love and we will always feel so proud of her. She was an amazing little lady and we feel privileged that she was ours. We will forever cherish the time that we had together.