By Jenny Barwise

Last updated at 09:48, Tuesday, 19 February 2013

A mum has revealed her 17-month-old daughter has the same heart condition that claimed her first child’s life.

Heather Findley and partner Gary Sayle with Lydia Rose

Heather Findley and her partner Gary Sayle say it is hard not knowing if their daughter Sophia will, like her sister, need a heart transplant in the future.

The Egremont couple’s first daughter, Lydia Rose, died just over two years ago when she was 15 months old.

Lydia was diagnosed with Dilated Cardiomyopathy – a condition in which the heart becomes weakened and enlarged and cannot pump blood efficiently – in May 2010 and two months later underwent a 12-hour heart transplant.

In the November Lydia was finally allowed home but tragedy hit the family less than a month later when she collapsed. The following day she died.

After Lydia’s death, heartbroken Heather asked doctors if they could test her for the condition, as up until then they thought Lydia had developed it because of a virus.

Heather was then hit with the blow that she herself had a mild form.

And when the couple’s second daughter Sophia was born 17 months ago they immediately had her tested.

Again, the results came back positive – but in a very mild form.

Heather, 25, said: “Luckily ours is a mild form and Sophia is doing really well. Hopefully things will stay like that. We were kind of expecting it as we were told that there was a 50 per cent chance – but we are relieved because she only has a mild form. Sophia is on medication but she could go the same way as Lydia and might need a transplant. It’s hard not knowing.

Sophia has had numerous tests carried out on her and will now go for six-monthly scans for doctors to monitor her condition.

Heather is speaking out about the family’s challenging times to raise awareness of the condition and to appeal to people to put their names – and their children’s – on the organ donation register. Heather, an admin support worker at Sellafield, said that she and Gary, 25, didn’t think twice about putting Sophia’s name down.

She is also continuing with her fundraising challenge for the Children’s Heart Unit at Newcastle’s Freeman Hospital.

Last week alone she raised £1,300 from a cake sale she held at work.

“I want to keep fundraising,” she said. “It helps keep Lydia’s memory alive.”

Heather said that when Lydia was ill, staff on the unit became their “second family”. “We just want to say thank you for what they have done for us,” she added.

To donate go to www.justgiving.com/Lydia-Rose-Sayle

First published at 09:33, Tuesday, 19 February 2013
Published by http://www.newsandstar.co.uk