Update: Aran had his surgery but they were unable to complete the surgery to fix his heart. Going from being told he will make a 100% recovery to having to live with terminal heart failure is devastating.

We are back at home, and Aran is enjoying life! It’s incredibly tough looking after a toddler with heart failure, being 8 months pregnant, and not knowing what the future holds.

We are grateful for all of the support we have received and want to make one final push to reach oir target and deliver the money to the research institute.

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Hi, we are Tom & Esther, parents to our beautiful 16-month old boy Aran.

The quick version

Our boy has a congenital heart condition that requires open heart surgery to save his life. Many cases of congenital heart disease never have a cause found. We want to fund research into children’s heart disease to help detection, prevention and treatments.

To raise awareness, I will be running every day that Aran is in recovery from his surgery, starting with 1km and adding 1km each day.

The full story

On Friday 22nd October, we left home to collect the results of an x-ray for a minor problem with Aran, and that afternoon our world was turned upside down.

The x-ray showed that Aran had a severely enlarged heart and we were sent to the children’s hospital straight away. The paediatric cardiologists confirmed that Aran’s heart is massively enlarged, functioning at a dangerously low level which could have caused his heart to stop at any moment.

He was diagnosed with a condition called Dilated Cardiomyopathy (DCM) which we had never heard of before. Essentially the heart muscle because very thin and weak, the tissue starts to die, and the heart can no longer pump blood properly.

After undergoing a series of tests, and being on constant medication to relieve pressure on his heart, we had a tiny bit of good news. Aran‘s cause of DCM is a congenital disease called ALCAPA, which can be corrected with surgery, although his heart is incredibly weak still so this is by no means straightforward.

ALCAPA kills 90% of children in their first year if they aren't diagnosed and treated. Aran has been very, very lucky.

If the surgery goes perfectly, there is still a long way to go in his recovery, which could take several years.

His surgery is scheduled for tomorrow (2nd November) and we are hoping he will pull through.

What your donation is for

As we found out more about Aran’s condition and other causes of heart disease in children, we discovered that many, many cases are never resolved as a cause is never determined. Outcomes for these children are extremely poor.

We want to help to fund the ongoing, world-leading research into heart disease in children carried out at the hospital where Aran is being looked after.

We want to improve the outcomes for children who have these problems by helping to detect, prevent, and treat these diseases.

Finally, by doing this, we want to raise awareness of heart disease in children to make sure parents can spot the signs early, and know when to ask their doctors to look more closely at certain symptoms.

What is ALCAPA?

Aran's condition is called ALCAPA. Your heart pumps out oxygenated blood to your body, and small amount of that is supposed to go back to your heart to give it oxygen through two coronary arteries.

With ALPACA, one of the coronary arteries comes from the wrong place, sending deoxygenated blood to your heart instead.

This causes the heart muscle to slowly die - like a very long, slow heart attack.

Aran's case is unusual because he has been relatively outwardly asymptomatic, but internally is suffering from heart failure as his heart isn't strong enough to pump blood around his body properly.

When we looked back through Aran's medical history, we do see all the classic signs of heart failure, but spaced out over a long period. These included: weight loss, poor feeding, extremely poor sleep, fussiness, waking in pain, tiring after exercise and finally a small amount of fluid retention.

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(In case anyone was wondering, the reason this is done as a "crowdfunding" page rather than a charity page is that the organisations we want to support are not available on JustGiving.)