Young Munich Couple Visits Denver & Global

Aurel is a beautiful boy who happens to have Down syndrome. His parents, Aina and Robert, share their personal story of hope, love and family.

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Aurel and Aina

2014 Be Beautiful Be Yourself Fashion Show Step & Repeat 056
Nayantara Ghosh-Ersek and Benan Ersek with Laura Dern and John C. McGinley

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1. How did you feel when you learned Aurel happened to have Down syndrome?

The diagnosis was a shock to both us, since we had no idea this would happen. We were told about 3 hours after he was born, and it was the last thing we expected to happen. Even worse though was when we were told the next day he would need a major open-heart surgery.

2. Have your feelings changed since that initial discovery?

Of course we loved him from the start, but initially there were so many feelings of fear, and a lack of knowledge about what it means for our child to have Trisomy 21. After his successful heart surgery, his great recovery and amazing progress, our worries have been greatly reduced.

3. What has surprised you about Aurel? How has he changed your lives?

He has totally surprised us with his amazing joyfulness and positive charisma. Since he is our first child, he has probably changed our lives entirely like any typical child would do – right? ☺

4. Aurel has grandparents in Denver, Hikmet Ersek and Nayantara Ghosh-Ersek. What relationship do they have with Aurel, and how has your extended family reacted to the diagnosis of Down syndrome?

Aurel is very close to his grandparents. We all spent a month together in Denver. When we are in Munich, we stay in touch via Facetime- which Aurel absolutely loves. The reaction of our families was just like ours, and they gave us all the support we needed. Throughout the past year they have been a great help and supported us in every way they could.

5. You recently visited the Sie Center for Down Syndrome at Children`s Hospital Colorado. How was that experience?

It was an outstanding experience. In Europe we have not found such a specialized support for Down syndrome at such a professional level.

6. Why is the work of the Global Down Syndrome Foundation important?

From our point of view it is important to spread the awareness for people with Down syndrome. Now that we are parents of Aurel, we realize the general society (including us one year ago) knows so little about the lives and capabilities of people with Down syndrome. Global Down Syndrome Foundation has found the right way to raise interest by showing society the talents, capabilities, hopes and interests of people with Down syndrome, spreading empathy and reducing ignorance. Also they finance scientific research on Down syndrome, a field neglected by the medical industry.

7. Having been to Denver. do you think there are cultural differences between how people react to Aurel in this city versus Vienna (where Aurel was born) versus Munich (where he lives now)?

Not really. Aurel is such a charming child that everyone likes him right away regardless of where we are. However we see cultural differences when there are abstract discussions about children with Down syndrome. Sometimes in Europe people refer to them as “disabled people.” In Denver we only heard the term “children with special needs,” which fits much better.

8. What do you want people to know about Aurel?

That he is the bravest among the three of us. After his open-heart surgery he was playing with toys 3 days after the surgery. The nurses could not recall any recovery within so little time.

9. What are your hopes and dreams for Aurel?

We just want him to be happy and enjoy life and be able to help him grow up to be a young and confident child and later on a grown-up who can achieve everything he wishes for.

10. Anything else you would like to add?

We would like to thank our families and close friends for all their help and support and love and would like to let them know we probably wouldn´t be where we are today without them. It was one of the most difficult and challenging years we have ever experienced and are so grateful for them just being there for us no matter what. Also we would like to thank the Whitten family for their support and the amazing team taking care of us at the Sie Center. It was one of the most eye-opening experiences we have ever had and are so grateful that we had the chance to meet you all! There is absolutely no comparison to the Sie Center here in Europe and we are very humbled that we were welcomed by you with open arms and embraced with so much care and knowledge and also love. Thank you!!!

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