Luke Robinson

Luke and Rachel's Great Wall of China Charity Trek

Fundraising for Great Ormond Street Hospital Children's Charity
£3,140
raised of £4,000 target
by 70 supporters
Donations cannot currently be made to this page
Event: Great Wall of China Trek with Discover Adventure, from 9 October 2014 to 19 October 2014
We help the hospital offer a better future to seriously ill children across the UK

Story

Thank you for taking the time to visit my JustGiving page. I am walking the Great Wall of China for Great Ormond Street Hospital.

At 11 days old my son was diagnosed with a life threatening brain malformation called Vein of Galen.

They saved the life of our miracle baby, Conor is now a healthy 15 month old.

This is our story so far....

We were told that we'd never naturally conceive any of our children. To be told that IVF would be our only chance, we grabbed it with both hands.

So when we found out that Rachel was pregnant, naturally! We felt blessed.

Our 12 week scan amazed us and we excitedly started to discuss if it would be a Smurf or a Smurfette. And to be told that our baby was due 2 days after my late Father's birthday, was fantastic!

At our 20 week scan, we found out we were having a Smurf, it felt like it was meant to be. We had multiple scans along the way, and a 4d scan at 28 weeks. So we got to watch our baby grow every couple of weeks.

At 39+5 weeks, on the 7th October 2012, on my Dad's birthday. Conor Richard Norman made his way into the world, with an entrance that none of us will forget. Weighing 8lbs 1.5oz.

On the 15th October, Conor had begun to act odd, not feeding, shallow breathing and his legs had gone a purpley colour. Our Health Visitor called an ambulance and off to the hospital we went.

Over the next 5 days and nurmurous tests, we went from being told that Conor had a chest infection, to pneumonia. After a chest xray, it showed that his heart and liver had enlarged. Then after an Echocardiogram at Birmingham Children's hospital, our world fell apart. Our tiny 11 day old baby had a life threatening brain malformation Called Vein of Galen.

Vein of Galen is a malformation of an artery to vein connection in the base of the brain. Because of this abnormal connection, extra blood is pumped to the heart, causing it to enlarge and begin to fail. it also causes the liver to imflame. http://www.gosh.nhs.uk/medical-conditions/search-for-medical-conditions/vein-of-galen-malformation

And within the next 2 days we found ourselves at Great Ormond Street Children's Hospital, an environment that was surreal, and strangely comforting.

On Tuesday 24th October, we handed our life over to Conor's amazing surgeon and his team. Leaving Conor in the operating, with the thought that we'd never see him alive again, ripped our hearts right from our chests. The minutes felt like hours waiting to be told that the operation had finished.

4 hours later, the surgeon sat us down and told us even though Conor had made it through, his heart had stopped twice. He said it was almost as if he had fought so hard, but his little body had given. If it wasn't for the anaesthetist and the battle she did, we would have lost Conor that afternoon.

Everyday Conor grow stronger. When we were sat down and told the outlook was poor, Conor fought and proved everyone wrong! He came off the venilator after 5 days, quicker then any of the doctors and nurses had expected. And then a few days after that we were back on the Neurology ward, and then eventually back to our local hospital, all in the space of 3 weeks. Conor had lost over a lb in weight, and had a feeding tube. He started taking bottle feeds again and that meant we could go home!

In Febuary we were back for his second operation. Again he amazed the doctors by only being on the ventilator for 2 days and 5 days in total needing to stay in hospital. Conor's surgeon told us that he was almost a 100% sure that he had managed to close off the extra blood flow and that this would be his last operation.

And that is what we were told on the 2nd October 2013, when we headed back to GOSH for the third time. Finally our little family could look forward to a future, that didn't include anymore major surgery.

So now it's our turn to give back for all the amazing work Great Ormond Street do. I am walking the Great Wall of China to say, thankyou. But we need your help too. We ask for you to spread Conor's story to friends and family. Many of you have followed Conor's story over the last 15 months and how how amazing his recovery has been. Some of you may have seen this amazing hospital in action for yourselves or someone you love.

This is the only way we can think of to show how much we appreciate the doctors and nurses for giving us our baby boy back.

Thank you for reading Conor's story and our journey to pay back all that GOSH have given us.......

Love Luke, Rachel and Conor. XxX

About the charity

We fundraise to enhance Great Ormond Street Hospital’s ability to transform the health and wellbeing of children and young people. Donations help to fund advanced medical equipment, child and family support services, pioneering research and rebuilding and refurbishment.

Donation summary

Total raised
£3,139.91
+ £408.75 Gift Aid
Online donations
£2,403.15
Offline donations
£736.76

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