Daiva Jonauskiene

Tell us a little about your work and yourself.

I am one of the three founders of Vaiko Širdies Asociacija, the Lithuanian Parent Organisation for CoHD. Initially, I was responsible for the organisation’s statutes and worked closely with the notary and parents. I also set up a charity account to support our work. Later, I was elected as the organisation’s first president. My main tasks now consist of fundraising and the legal aspect of endowments.

What was your main motivation in establishing a national Lithuanian organisation for parents of CoHD patients?

I have a daughter who has a heart defect, and for her I am able to do whatever I can. But there are a lot of children with CoHD in Lithuania, and together with our doctors I want to do something that benefits them all. After the Corience/ECHDO meeting in Berlin in November, I felt proud and appreciative to be a part of such a large community, and I wanted to inform the Lithuanian parents and cardiologists about the important work of Corience. I also felt an obligation to establish a CoHD organisation in Lithuania.

What's the situation like for families with a CoHD child in Lithuania? What would you like to improve?

Families in Lithuania are left alone with their problem. One of my goals is to bring them together. Together we will be strong. I also want to set up computers with internet access for our patients in the hospitals. That would allow them to communicate with their families and friends, and also to access information about CoHD as offered on www.corience.org, for example.

With Corience we want to build up an information platform that provides patients with up-to-date information on congenital heart defects. What kind of information are you looking for on Corience?  What do you expect?

I’d like to find more information about rehabilitation and GUCH. Also, there could be more information about fundraising for NGOs and the opportunities for NGOs within the EU system. As a new organisation, we would be grateful to tap into the experiences of older organisations and share knowledge on things like how to run a summer camp.

Finally, a personal question: what do you like to do when you’re not working?

I love the submarine world, especially in the Red Sea. When you are diving there it is possible to see a lot of colourful corals and fish. My dream is to visit Australia and to experience the underwater world down under.