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Karen merrin

The Braveheart Ball

We are holding The second Braveheart Ball for Rebecca' s Rainbow Heart Ebstien's Anomaly Trust because To fund a Childrens Cardiac Nurse for Grampian

314 %
£1,417.00
raised of £450 target
by 48 supporters
Donate

Rebecca' s Rainbow Heart Ebstien's Anomaly Trust

“When someone tells you that your child’s heart is broken, your heart breaks too.” J.G Rebecca’s Rainbow Heart EA Trust was founded to help children affected by Ebstein’s Anomaly it also campaigns to improve cardiac care and support for all cardiac children in the North East of Scotland.

Charity Registration No. SC041757

Story

Sadie was born with a heart condition called Dilated Cardiomyopathy, for Sadie this meant her heart was week and unable to pump blood around her body as well as it should. Sadie would get tired very easily and was unable to thrive in the way other children can. She was very small and week and during her first 2 years spent very little time at home. 

At that time we were given little hope for the future, her only chance was to have a heart transplant, but we were told that hearts rarely became available for babies. 

Fortunately Sadie is a determined little lady, and fought against all the odds to survive out of hospital without a transplant from when she was 2 until she was 7 when her heart could cope no longer. 

At that time she was constantly out of breath, having dizzy fainting spells and was unable to take part in any activity. Sadie was admitted to our local hospital in Elgin, then transferred to Yorkhill Hospital in Glasgow, and then onto The Freeman Hospital in Newcastle where on Hogmanay 2012/2013 she received her new heart. 

We have been very fortunate and since her transplant Sadie has gone from strength to strength achieving so much, none of which would have been possible for her before her transplant. Sadie will always require constant monitoring and will have to take medication daily for the rest of her life to stop her body from rejecting her new heart.

Heart transplantation is incredible and has given Sadie a life we never dreamt was possible, but it is not a cure. Sadie will always be at risk of rejection and will need to be kept immunosuppressed for life which can cause many complications. 

1 in 180 children are born with some form of heart disease, it is the number 1 cause of death from a birth defect and will annually kill twice as many children as cancer.

Sadly there is no cure to congenital heart disease,  these children will always require constant monitoring and extra vigilance.

Rebecca’s Rainbow Heart Ebstein’s Anomaly Trust was set up to fundraise to provide a Children’s Community Cardiac Nurse for Grampian. So far the charity have been able to fundraise enough to be able to support this role for the next 3 years. 

There has never been a Children’s Cardiac Nurse for Grampian before and there is very little support for the families of these children in Grampian. When Sadie was small this kind of practical and emotional support would have been invaluable and by holding the Braveheart ball this year we hope to add to this total, making Rebecca’s Rainbow Heart Ebstein’s Anomaly Trust one of the two chosen charities the Braveheart Ball will donate to this year.

Thank you for taking the time to read about our cause and if you can donate at all in anyway it would be hugely appreciated. 

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