Updated on Nov 5th 2012 at 8:32 AM from the JustGiving API

Thank you so much everyone for all your support!!! This page closes today and we have managed to raise £1070 for CHUF!! Thank you xxxx

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We are taking part in Total Warrior on the 5th August 2012, a 10 mile run with 31 gruelling obstacles in Shap, Cumbria. www.totalwarrior.co.uk

We are doing this in memory of our friend Emma Jeffrey, 37. A loving wife and mum of 3 little girls, who died suddenly last October after suffering a massive brain haemorrhage in the middle of the night. Emma was a caring and inspirational lady who loved to run and has inspired us to take up running. Emma was so full of energy and would do anything for anyone. She will be truly missed by so many of us.

We are also running this race for my good friend Kathryn whom I’ve known for 18 years and to raise as much money as possible for The Children’s Heart Unit Foundation at the Freeman Hospital. Kathryn’s little boy Ryan was born in January this year and appeared healthy. When he was 6 days old he was drowsy and wouldn’t feed, they took him to hospital where they said he had a virus…….

Here is Kathryn’s story:

 He was ok for a few days and on the 10th day he started having difficulty feeding and breathing. We took him back to hospital where they blue lighted him to the RVI. Once here he underwent loads of blood tests and was put on numerous drips to stabilise him. We got told he had an adrenal gland problem and would be kept in to confirm this. That night he was still having trouble with his breathing and his heart was large on an x-ray which didn’t fit with the diagnosis. When the tests came back from London it confirmed he didn’t have an adrenal gland problem.
That was when the doctors told me that it was likely a heart problem that would need surgery, they took him straight away by ambulance to the freeman children’s heart unit where he underwent an echocardiogram and they confirmed he had a coarctation of the aorta and a vsd (hole in the heart) He needed to be put on medication immediately to stop the duct in the heart closing as the blood flow was not getting round his body properly and if left too long his organs would shut down.
He went for surgery the next morning which was the longest 4 hours ever. They repaired the aorta by cutting out the narrow part and stitching it together, they said that while this had been a success there was w further narrowing in the aortic arch which they couldn’t do as the cost of perfection was too high so he would need further surgery later on. He did well after surgery other than his kidneys went into failure due to increased blood supply; these corrected themselves by the time he was discharged which was great.
He did well at home gaining 4 pounds in five weeks but when we went for check-up they said the arch had narrowed considerably an to prepare for open heart surgery in next few weeks. After discussing his case with the surgeon they took him on Friday 8th march where he had open heart surgery to patch widen the arch and close the vsd, for this they had to put him on bypass and the op took 6 hours. When we got to see him he was covered in tubes but had done well thru surgery. He came off ventilator 3 days later and was home after a week he has done fab and has continued getting stronger.

There is no cure for congenital heart disease which can affect 1 in 100 babies,
Without the fantastic staff and surgeons at the freeman Ryan would not be here today, he will need check-ups for life with small risk of further op.

The Children’s heart unit do fantastic work and is one of only two centres in the UK offering paediatric heart transplant and bridge to transplant. They also have the expertise and support systems through their transplant service to allow them to undertake high-risk surgery. The Children’s Heart Unit is also the only service proving before birth care with seamless transition to adulthood. Providing world class care, the unit is structured to deliver the best possible results for critically ill babies, children and young people. The money they raise goes towards research, equipment and buying things to help children feel at home when they are there.

We will always be grateful to the Freeman for giving our boy a chance.

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