Our son Owen James was born on the 16th of july 2016 at 4.32 on a saturday morning. This was the most amazing moment of my life...Owen was a nice healthy 9lbs 4oz and looked completley healthy. We were moved up to the ward with all the other mums and new bundles and was seen by a midwife who checked Owen over routinely, she checked his sats and his oxygen levels were low, because he looked so healthy she thought the machine was broken so checked again and they were still low, she went and got one of the peadiatricians to check him over...at this point my partner and family didn't think anything of it..but that is when he told us that he had found a heart murmur and owen has a heart problem. Our world fell apart! He was taken from us on the day that started as the best day of our lives and it turned into the worst! Owen was diagnosed with a rare congenital heart condition called ebsteins anomaly, Ebstein's anomaly is a congenital heart defect in which the septal and posterior leaflets of the tricuspid valve are displaced towards the apex of the right ventricle of the heart. Ebsteins affects 1 in 25000 babies and in the uk there is very little research into this condition.

My aim is to raise awareness of ebsteins anomaly for babies and children in the uk to be given the same chances as children in the states have! More research needs to happen in the uk.

Although Owen has Ebsteins mildly, there are babies who have this anomaly severely and need help and need that awareness of condition.

Please help me raise awarness and money to get research in the uk!