On 17 May 2012, our beautiful daughter Chloe suddenly fell ill. She was taken to the Portland, and then shortly transferred to UCLH. Her condition worsened overnight and on 18 May 2012, Chloe was transferred to GOSH. Within an instant, our very happy world was thrown into deep turmoil. 

Over the next 6 months, Chloe put up an inspirational fight at GOSH. She wanted to live. Despite the many crashes back into intensive care, Chloe never stopped defying the odds. She was a happy girl and was loved by so many. She had the best quality of life that a little baby in her circumstance could have. And her bravery and fighting spirit enabled us to never, ever give up hope. We believed, every second of every day, that Chloe would come home. And slowly, Chloe got better and stronger. Shortly before the end, Chloe was finally strong enough to be allowed away from her bedspace - this was life changing for her and for us. In the park, she grinned "like a cheshire cat", and looked at the sky and the leaves on the trees in amazement. She smiled when the wind blew on her cheeks.

At the very end, Chloe caught a minor chest infection. But by this time, her lungs were so damaged that she could no longer fight it. Despite trying and fighting until the very end, Chloe's last xray showed that there was no longer any hope. Even if she made it through this episode, the only future left for her was a world of invasive medicine, and of pain, with little chance of recovery. It was then that Chloe decided to say goodbye.

We spent a beautiful night with Chloe on our last night together - it was private and serene. She waited and gave us that time together. We talked, we sang songs, we read books. We told Chloe that we understood she was tired, and we promised her that we would keep her spirit alive, forever. Chloe passed away on Thursday 22 Nov 2012, at 9.15am. She was 9 months to the day. She died peacefully in our arms, with dignity and without pain.

Chloe was born with a very rare lung deficiency, so rare that it had never been seen before at GOSH or indeed worldwide. Her illness was neither curable, nor understood. Her gift to the world will be to help other families whose children might be born with the same illness to give them a chance of life.

There are other children at GOSH who, like Chloe, are very sick. The staff at GOSH perform miracles, they really do. But they need our help and through raising money in memory of Chloe, you can help to keep her spirit alive as well as help to save another child's life.

Thank you,

William, Thuy & Sophie

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Reflection by Reverend Dorothy Moore Brooks, Chaplain at GOSH, given at Chloe's funeral on 29 November 2012 

None of us would ever have wanted to be at this service, for we all hoped and prayed that things could have been different for Chloe. And yet we are strangely privileged to be here to stand with Will, Thuy and Sophie, because the little girl they mourn for today, touched the lives of all of us. On a day like today we have so many questions. And it is important to ask them, because the only way to deal with grief is to be honest about it. We may feel anger, and that has its place too, as everything within us screams that the death of an innocent child is so wrong. The questions, the anger, the disappointment and the hurt have their place today and in the days to come.

But something else has its place and needs it voice too. And that is gratitude or thanksgiving. I think it is significant that Chloe died on the morning of the American festival of Thanksgiving, a day when many people stop to take stock and give thanks for the good gifts in their lives. Chloe was surely one of the good gifts to this family and community.

What is the lasting legacy that Chloe has left for you? What is it about this little girl that has moved you to be here today? What was it that you saw in her which drew you to her, which melted your heart when you heard of her, or saw photos of her, or nursed her, or held her, or read stories to her, or comforted her?

Chloe’s life was painfully short, but she achieved more in her 9 months than many of us will achieve in decades, for she brought with her a wonderful gift of love. We saw this in how Will, Thuy and Sophie cherished her in the time they had together. We saw this in how so many of the staff who cared for her at GOSH were so drawn to this little girl whose life was such a struggle. Maybe you have experienced it in the feelings that Chloe’s life and death have brought up in you.

There were some very very hard times for Chloe. There were nights when we were not sure she would see morning, days when each breath was hard work for her. In many ways, she had a rotten deal and she surely suffered more than many of us ever will. And yet Chloe had an extraordinary way of bringing light, hope and love to everyone who knew her.

Chloe may be gone from your sight, but her love will always live on in your hearts. Eternity is not just the domain of the religious. Eternity is what we have when we allow little ones such as Chloe to have a lasting legacy in how we live our lives. So give thanks for the light that this little girl brought to you, for the good memories of time spent with her, for the love that you shared with her, for the moments when she made you smile or taught you beautiful things. Give thanks for the lessons Chloe taught us all about courage and hope - for those times when most of us would have given up but somehow Chloe decided she still had some fight in her and surprised us all with one of her remarkable comebacks. Give thanks for the moments when she looked at you with her big eyes and you felt a love that bowled you over. Give thanks for her life, a life which has changed us all and for which we are so grateful.

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