This page is in loving memory of our gorgeous daughter Lydia Rose Sayle. She grew her angel wings on 1st December 2010 at just 15 months old after suffering a heart attack.

I am holding a cake sale on Monday 11th February at work to raise money for the Children’s Heart Unit, Freeman Hospital.

It is Congenital Heart Defect (CHD) Awareness week 7 - 14 February.

Every year over 1,000,000 babies are born worldwide with a Congenital Heart Defect and 100,000 of them will not live to see their first birthday, and thousands more die before they reach adulthood. Some of these are undetected.

Here we tell our story about her battle and extreme bravey through everything she went through.....

At 8 months old in May 2010 Lydia was transferred to the Freeman Hospital, Newcastle where she was diagnosed with Dilated Cardiomyopathy, this is a condition in which the heart becomes weakened and enlarged, and it cannot pump blood efficiently. Within a few days she needed emergency open heart surgery to have the Berlin Heart fitted (see pictures) or she could have died in a few hours. Following this the doctors then told us Lydia needed a heart transplant to survive. As we waited for a suitable doner heart Lydia had 4 strokes, this is due to her blood being thinned down for the Berlin Heart and clots forming. The skrokes left her with left sided weakness in her arm and legs but her legs were stronger. She was on the Berlin Heart for 2 months.

The day finally came and on 23rd July 2010 Lydia had her transplant operation. She was in theatre for 12 hours and was really poorly after the operation, we were told she wasn't out the woods just yet. Due to the muscle weakness from the strokes she was transferred to Newcastle General Hospital for intense neuro-physio for a month before we were transferred home. She came on so well in that time and plans were put in place to bring her home. She also needed a tracheostomy, which is a tube in her trachea to help support breathing and then this was successfully taken out after 2/3 months.

4 months later on 3rd November 2010 we were finally allowed to take our baby home but still had to travel back and forth to newcastle weekly for clinic. She seemed to be getting stronger and stronger and was a happy little girl, she would sit and play and watch tele, underneath the feeding tube and life time medication she was just like any other normal child.

Then on 30th November she suddenly collapsed at home and was rushed to West Cumberland Hospital where doctors fought to save her. They then made the decision to transfer her to the Freeman Hospital via helicopter. Through the journey and on arriving she suffered more cardiac arrests and then was put onto a life support machine (ECMO) to rest her. Is was then on 1st December 2010 doctors told us they couldn't do anymore, she was not responding and had a bleed on the brain. Therefore had to turn the machine off and she passed away.......... Through everything she went through she always mangaged to give her mammy and daddy a cheeky smile.

Since then I too was diagnosed with Dilated Cardiomyopathy and found to be hereditary. I have got another little girl now who is 17 months and has the same condition. Luckily ours is a mild form and Sophia is doing really well. Hopefully things will stay like that but who knows.

There isn't a day that goes by that we don't think about Lydia and wish she could still be with us today, We love her so so much and will never forget her.

Thanks for taking the time to read our story..... Heather & Gary. xxx