Evgeny Lebedev

‘For offering hope in our darkest hours, thank you’

The Independent Wednesday 3 February 2016

Elliott Livingstone's parents tell Evgeny Lebedev what our £3m appeal has meant to them and other families

Last week I was handed a letter. It was a letter from the parents of one of the children featured in our campaign for Great Ormond Street Hospital. It expressed, better than I ever could, the difference made by the generosity shown by you, our readers, to this most special of hospitals.

The writers were Adrian and Candace Livingstone, whose little boy Elliott, a two-yearold awaiting a heart transplant, many of you will be familiar with from the stories we have told about him. They wanted, his mother and father told me, to thank everyone who has helped make this appeal such a remarkable success.

“There are times when ‘thank you’ doesn’t seem enough,” the letter starts. “When offering our gratitude seems so inadequate it leaves us feeling guilty we can’t offer more.

“Elliott is our only child. In the two years he has graced us with his presence, we have spent the majority of his life in hospital. We have kissed him goodbye more times than we care to remember.

“Fighting to keep him alive is the only life we know. This is our normal. A normal we have decided to embrace and seek every positive from.

“This situation teaches you to be thankful for what you have; for the small things in life,” they wrote. “Every kiss, every hug, every smile, every time we feel his warm breath on our skin, we grasp on to and cherish every moment we have with Elliott.

“Most parents want the best possible future for their children. For Elliott, we just hope for a future. Thanks to the continued public support for GOSH through campaigns like the Give to GOSH appeal, our hope, and Elliott, is still alive. Your donations have ensured that GOSH will remain a beacon of light and hope for families in their darkest hour.”

Great Ormond Street Hospital sees many in their “darkest hour”. It has been a privilege, over the past few months, to spend time with the hospital staff who dedicate their lives to helping children and parents as they face unimaginable challenges.

This help can take many forms. For Elliott and his parents it is medical, the ongoing treatment that keeps him alive while the wait for a suitable heart donor continues. But it is also pastoral, the challenge of having a very young child spending his earliest years on a hospital ward. Elliott took his first steps at Great Ormond Street Hospital, said his first word.

Help can take other forms, as I have seen on myvisits. Not all children are like Elliott, for whom there is a chance of recovery if he can stay well enough until a donor heart arrives. Other families will not leave the hospital together. Yet for them there is also help in this most dark of hours.

The mission of the Louis Dundas Centre for Children’s Palliative Care is to be there for children and their families at the very end, making that moment as peaceful and painless as possible. It also provides support to the most critically ill children, so that their lives are as full and as happy as possible.

The centre’s staff are always at the end of the phone, whatever time of the day or night it rings, when parents and children need them most, when their children are in pain, or when the worst of life’s decisions have to be made. Decisions like when to stop treatment, or what to tell your child as they approach the end of their life.

“These are the most challenging decisions, the most difficult decisions, the most humbling decisions that any of us – the children, the parents, the clinicians – can ever make,” Myra Bluebond-Langner, the True Colours chair in palliative care for children and young people and lead professor at the centre, told me.

These were decisions faced by Sujatha and her husband Anand, whose son, Rehaan, was born with a neuromuscular condition that in the end stopped his ability to swallow, leading to respiratory failure. Staff at the Louis Dundas Centre provided support in the last days of Rehaan’s life.

“I remember we were told that Rehaan had only a few hours to live,” Sujatha explained. “Since he passed, every day has been difficult for us. We are taking turns to support each other and try not to break down at the same time. But at least he is not suffering any more.”

As well as helping the Louis Dundas Centre with its magnificent work, your donations will fund new research programmes, equip a new specialist heart unit and provide support for the families spending months at the hospital.

So far, our total stands at more than £3m. It is more than we ever believed possible when we launched this appeal, and there is still a week left until it closes next Sunday – GOSH’s 164th birthday.

In their letter, the Livingstones say that from the window of Elliott’s room they can see a new heart unit being built. That unit, part-funded by your donations, will help look after children like Elliott for years to come.

“Our hope,” they said, “is that our contribution, no matter how small, raises awareness of the life-saving work GOSH carries out for children from all over the UK and allows patients to suffer less than Elliott has.”

I was handed the letter when visiting Candace and her husband at Elliott’s playroom in the hospital. If it wasn’t for the medical equipment in it helping keep Elliot alive, it could have been be any normal playroom, complete with toys scattered across the floor and gaudy posters of pop stars and football players stuck to the walls. We drew some pictures. He “made” me a cup of tea on his FisherPrice cooker.

Elliott has been slow to start speaking, perhaps because of the trauma experienced in his young life. For now he often talks in basic sign language, taught to him by his play specialists and the speech and language therapists at the hospital.

To say thank you he taps the tips of his fingers to his mouth. As we said our goodbyes, he turned and tapped “thank you” to the doctor and nurse present. Then he turned to me and he tapped the fingers to his mouth again. Thank you.

Thank you everyone who has donated to this appeal, however great or however small the donation. Thank you for helping children like him. Thank you for caring. What we have achieved is extraordinary.