By Clairy Kourkouta
“Whenever I thought of myself as a mother, it never crossed my mind that I could have a child with special needs.”
I always admired the families of special needs children so much and in fact I was saying that for people with special needs it’s really difficult to live in Greece, since common things such as government allowances, extra benefits, schools etc are things that someone has to look for by him/herself.
A year ago and after a series of specialized tests, we found out that our sweet little girl, Olia has Angelman Syndrome, del +. By the time we got the results, we were sure that there was something wrong with her, but we never thought that it would be so serious. Our world simply collapsed. Questions like “Will she be able to go to mainstream school?” “Will she be autonomous?” and many more were in my mind. I remember myself crying a lot and at the same time trying to be calm and positive, because our second daughter Danae was only four months old and I was breastfeeding her. I wasn’t able to breastfeed our angel for more than a month and I wanted to offer that to Danae for as long as she and I could handle it, so being calm was quite important.
A year has passed since her diagnosis and with joy I say that it wasn’t as difficult and scary as I thought it would be and our life hasn’t change so much. Yes, we have many therapies within the week, instead of ballet or painting lessons, but it’s not the end of the world. I have met amazing people who supported me and showed me that I am not alone. My emotions are so real and pure and at the same time I feel so strong and that I can overcome anything.
Our angel will turn three years old next month. She continues to show her passion for life and how much she wants to understand and to achieve new things every day. We are really amazed by the things she has already accomplished.
This Christmas she gave us the best present. She made her first independent steps! Not many, she made 6-7 steps but it is a start. I truly believe since she did 6-7 steps, she will eventually manage to walk independently one day soon.
Furthermore, I find her clever; I see that she gets to choose when to respond on an order that we give her. If it’s for things she enjoys, then she responds perfectly, but when she doesn’t care she simply ignores us. So with much work, I know that one day she will be able to do many things by herself. Fortunately, we are lucky because she doesn’t suffer from seizures, we do take seizure medication, (when we got her diagnosis she did have two short absent seizures), but we didn’t have any since then.
Olia since September is going to a mainstream kindergarten with great success. She managed to be less hyperactive, to be able to watch a small theater play, and to sit and eat in the kids dining area. She can play with her little sister. It’s adorable to watch the two of them together. Even when Olia hugs Danae and as you can imagine she does it in a clumsy way, Danae laughs and most of the times show that she enjoys it. She is only three and already she has accomplished so many things. I believe with all my heart, she will be able to accomplish much more throughout her life.
Recently I realized that my biggest anxiety is not having a kid with Angelman Syndrome, but having a special needs kid and living in Greece is difficult. Greece is a small country, full of beauties and sun and full of friendly and open people, but sometimes this is not enough. Unfortunately, the procedures, the legislation regarding special needs people and the school choices are not clear and easy to find out. In other countries there are plenty choices for schools, for home daycare, and problems such as these are taken care of. Unfortunately, this is not the case. In Thessaloniki where we live, there are only four children with Angelman Syndrome or at least these are the families we managed to find. In Athens there are more cases but still not many.
So there isn’t an organization or a website yet; but this is nearly changing. Me with some other moms have worked hard and created the first Greek website (www.angelman-syndrome.gr) which will be launched at this year’s International Angelman Day! Also, I have created a poster in order to bring awareness. Our poster was a big success and not only was it placed at many spots in Thessaloniki, Athens and Cyprus, but it was also published to e-magazines, blogs and websites. Moreover, I was asked to speak to a local but very well know radio station about IAD. Our next goal is to form an organization in Greece and I really hope in the coming years the Greek organization will be able to raise funds to donate them for the international goal of finding a cure.