What is the main mission of the organization you started and named “Pod krídlami Dominiky” (Under the Wings of Dominika)?
The major mission of Under the Wings of Dominika is operating a child hospice. Since obtaining the statute of a healthcare facility is very demanding both in terms of finance and time, for now we decided to help children with oncological diseases from the Nitra region at least materially and also by providing transport to and from the hospital.
This work certainly demands a lot psychologically as well as timewise. What gives you the necessary energy and what are the positives aspects of this work?
I do admit there are moments when I am convinced I cannot take it anymore. But then I receive a message from a mother saying how much she appreciates that we were there for her and how much we helped her by e.g. giving her and her child a ride home from the hospital or giving her a package with cosmetic products thus enabling her to put a few euro aside. The most recent experience showing me that we do the things the right way was at our Christmas party, when parents brought me various figures of angels as a way of saying ‘thank you’ and declaring I was their angel. These are the things that put you back on your feet and you are able to carry on, because parents do appreciate it a lot and they will show it. And, last but not least, it is my husband; anytime I face a problem, he offers me a shoulder to cry on without any unnecessary words and he helps me to stand up again and move on. And then there is my son Adam, aged 15, who always makes sure we are entertained – or concerned for that matter – and that our life is a little more fun and we do not only concentrate on our work.
How has your perspective of life in general changed after your personal experience of losing a child?
The loss of Dominika continues to hurt. I do not think too much about the future anymore and I try to live my life and enjoy the moments with my family here and now. Particularly, I am much more worried about my son than I used to be. Any single cough or a brief headache leads me to envision various worst-case scenarios. This is the toll that has to be paid by every single parent whose child has gone through oncological treatment.
Your organization has operated for over two years now. What did you manage to achieve during that time and what are your goals for the future?
Looking back over my shoulder, we have really managed to achieve a lot: we organized a benefit concert, issued a charity calendar for 2016, where children had beautiful professional pictures taken of them and received a large-size photo of themselves printed on canvas, we provided material assistance to families amounting to several thousand euro, we managed to spark up children’s smiles and eyes with various toys, purchased a car for child transportation and run up almost 30 000 km with it, employed a driver to be able to provide transportation more often, organized two Christmas parties, met with families whose child has died and, primarily, we purchased all necessary essential devices required by the law to found a children’s hospice. Although the equipment is currently sufficient only for a single child, I do believe that with time, we will be able to buy more medical devices so that we could provide care to several patients.
At the moment, we are waiting to obtain the license for a children’s hospice so that we can get fully involved in fulfilling the goals of our organization. There are several plans we have and the most prominent is to gain more donors so that we can provide hospice care not only to children who are oncological patients but also to other children, who were born with a life-threatening diagnosis, because there are many more of the latter and they are almost always small babies.
The donation we received from AmCham shall be used e.g. to finance the June weekend meeting of families who have lost a child. This event is taking place in the town of Štúrovo, where the parents and primarily the children will get to know other families, which have suffered this heavy loss so that they realize they are not alone in their struggle and specifically, they will be able to consult a psychologist, too.
One of the largest and boldest dreams and simultaneously an objective I have set is to found and operate a daily hospice stationary-care facility for children, where parents would be able to bring their child for the whole day. Then, moms (and dads) will be taken care of by various specialists, such as massage therapists, hairdressers, beauticians... Simply said, we would allow them to have a day off from providing so much care to their children. Because when a mother takes care of a dying child and is in emergency status 24/7, she tends to totally forget about herself and the fact that she also needs some help and particularly a little bit of understanding. I spent three long weeks in the hospital with my little daughter while she was dying and I remember the incredibly heavy toll it took on my body and my mind. There were nights when I could not even move. And how happy would I have been, if there was anybody, who would sit next to my daughter at least for a while so that I could, for example, go for a walk. Nurses were too busy for this and commuting of my husband and son to the hospital was too costly. I believe that other parents experience the same problems at home too and that is why this service would really help them.
Žaneta Petrášová, Founder, Under the Wings of Dominika
For more information visit www.podkridlamidominiky.sk