THE PARENTS of a baby who passed away at just 13 days old are aiming to raise awareness of the rare condition he suffered from.

Lauren Nuttall, and her partner Joe Witty, were left devastated after the death of their son Ruben in April due to Hypoplastic Left Heart Syndrome.

The couple, who live in Malton, now want to highlight the symptoms of the heart condition and also raise funds for the charities which have supported them.

Lauren said Ruben was born on March 20 following normal labour with the family returning home three days later.

"We took Ruben back home and got settled in for the night. Ruben had been very sleepy all the time since he was born but no one raised any concern at the hospital. When we got home is when things took a turn, Ruben's breathing became rapid and he was struggling to breathe, we had a gut feeling something was wrong so we were on our way to York A&E - just 10 hours after we got him home.

"After hundreds of tests, cannulas, injections and everything under the sun being done to our beautiful boy, he was deteriorating quickly.

"They had to give him oxygen and transferred him onto the children's ward, to try keep him stable whilst they tested to see what was wrong with him.

Lauren added: "Watching him with wires coming out of everywhere and struggling was heartbreaking knowing we couldn't do anything to help him. After 24 hours of being there Ruben deteriorated again and ended up being transferred to Leeds paediatric intensive care unit where they scanned him and found out he had a heart condition called Hypoplastic Left Heart Syndrome, a very rare condition.

"We were told Ruben's condition was on the worst end of this rare condition and he wouldn't be able to have the three surgeries required for that condition. We were told he would be taken to Martin House Hospice where they would remove all his breathing ventilators and he would pass away.

"We were in Martin House Hospice for nearly five days with him as he continued to fight on and didn't want to leave us. He surprised everyone, even the doctors because they thought it would be hours due to the severity of his condition.

"On the April 2, Ruben passed away peacefully whilst having a cuddle with me and Joe. The most horrendous pain to see your child die and have to say goodbye."

Lauren said they now wanted to raise awareness of symptoms of the heart condition that wasn't picked up antenatally.

"We are now going through a review with the hospital in hope our story can change things with scans etc to try make other people's experiences better and to get a better chance of these heart conditions being picked up earlier.

"We now feel an overwhelming feeling of trying to raise awareness of heart conditions but also to raise money for Martin House Hospice and The Children's Heart Surgery Fund (CHSF) the amazing charity that supports the Leeds Congenital Heart Unit by providing the funding and resources needed to care for a patient’s heart, mind, family and future.

"We want to give back to these incredible place and help the staff, equipment and also for the families who have to go through traumatic times like we did and keep Ruben's name alive."

Lauren and Joe are hosting a fundraising bingo this Friday at the bowling club in Norton. The event is sold out but a signed Leeds United football shirt and football are being auctioned off with the final sale taking place on the night. To make a bid message Lauren on Facebook.

To make a donation go to their fundraising go to https://www.justgiving.com/page/laurensfundraiser-chsf