Here's to many more Christmases...

"The heartbeat is something so simple that we take it for granted. It's easy to forget how important it is until something goes wrong," said mom of a boy named Billy. They were part of December 2018 holidays' campaign to raise awareness about congenital heart defects.

What the charity Tiny Tickers* did was connect Billy's heart monitor to Christmas lights in part of London. That same year was our daughter's first Christmas.

By that time she has had two open heart surgeries, one surgery on her belly to insert the button-loop feeding jejunostomy, and numerous other procedures. We have already learned a lot about her single ventricle heart. We have learned that there is no cure for it. That there is no surgery to rebuild it. That everything medicine is able to provide so far is palliative. But there was hope for more. Still is.

What is possible today was only being wished for about 50 years ago. Imagine what another 50 years can bring!

Our Emanuela might not be here to see it. Or she might. Only time will show. But for every future 1 in 100 there is more hope. Yet only if people are aware that 1 in 100 babies born have a congenital heart defect. That 1 in 100 parents have their lives turned upside down.

There are many organizations and associations raising awareness, helping parents navigate the life they did not dream of having and raising funds to help children born with defected hearts have the best possible outcome.

You can help too. Donate. Volunteer. Be creative.

*TINY TICKERS - a UK charity that helps improve the detection, care and treatment of babies with serious heart conditions.