Sideris-Tsangaris Family Story

 

SKEVOS’S STORY & OUR FIRST OZED CAMPHRENCE

Skevos’s story started out just like any other story. The perfect little baby who fed well, was always normal on the growth charts and in general was a happy baby! We were also happy that he had this beautiful fine blonde hair and perfect shaped face. Neighbours were wondering about the way he looked as he was very fair considering both parents have olive complexions!!!

It wasn’t until Skevos was almost 18 months old that we noticed something odd.  No first teeth were raised, he had delayed speech, very dry red itchy skin, he was always feeling unusually warm, his cheeks and ears would turn red and we couldn’t see any sweat from his skin.  Maybe it was my mother’s intuition, as I somehow knew, in that moment, that our lives would change. I just knew our lives would take a turn we were not expecting.

After much googling I stumbled on the OZED and NFED websites. I realized it was possible Skevos had this disorder called Ectodermal Dysplasia. While his Paediatrician and Dentist initially refuted this claim, I could not find any other explanations for his Hypodontia (lack of teeth) and Hypohidrosis (lack of sweating).  So off we went to Athens (we were living in Greece at the time) and visited the Genetics department at the children’s hospital.  Skevos was genetically tested, as well as myself and my husband Tony.

We received an official diagonosis – Hypohidrotic Ectodermal Dyplasia. My Google diagnosis was confirmed!  At this point, I went through the whole range of emotions….I cried because I was sad for him, I cried because I was happy it wasn’t anything more serious, I got upset that somehow I passed on a recessive gene to this innocent little soul.

Then I hugged him and realized that with a lot of research and a lot of love, our little boy will grow up and lead a happy, successful life. This disorder won’t disable him, it will enable him. It will teach him lessons that may be hard to learn but will build character. It will show him that all of our imperfections make this world a little more beautiful.

I contacted ozED and spoke to Andrew who was the President at the time – I have never felt so compelled by his words of support and encouragement… that everything will be okay.  In 2008 after spending 9 years in Greece we decided to move back to Australia.

We became members of ozED in 2008.  This year marks 11 years since joining ozED and 10 years since attending our first ozED Campherence in Brisbane back in 2009.

Our first camp was emotional, to say the least. When we first walked into the meeting room, we immediately noticed that everyone looked like us. No one stared at us for looking different.

Everyone just smiled…Andrew, Nat, Jenny, Victoria, Leanne they welcomed us with open arms. Everyone was telling me how cute Skevos was. This was not something I heard very often from strangers. We instantly felt like we were at home! We will never forget the time Jenny asked Tony how he was feeling… and he responded by placing his hand on his heart… his way of expressing how blessed he was to be here at our first ozED camp.

I cried throughout most of the camp because I was just so overwhelmed …not with sadness… but with joy. What a comfort it was to meet other families who knew every struggle, every emotion, every setback that we had experienced over the past years.

I have never felt like I had to explain myself to anyone there, they just knew. Everyone had such valuable tips on keeping Skevos cool and safe. There were families there to teach us what to expect as Skevos got older. We felt so prepared to tackle the challenges we faced.

In a world where this condition affects 7 out of every 10,000 individuals – we are no longer the minority, but the majority at Camp.  There are no other means technologically or otherwise, that can replace the face-to-face conversations, sharing of joys and triumphs, lamenting of challenges, and shedding tears with someone who “gets it” that come from being together at Camp.

After leaving each Camp we feel so blessed that we are part of the ozED family.  Nothing can replace this connection.  It is a lifetime connection.

Lastly, I want to say a big THANK YOU TO THE FOUNDERS of ozED – Andrew & Nat.  I will never forget our first ED conversation from Greece back in 2007.  You both have enhanced the quality of life of those impacted by ED including mine, through your advocacy, education and serving as a national information and support resource.

I cannot stress how profoundly grateful I am to be a part of the ozED Family.   Let’s not forget that ozED is a 100% Volunteer organisation and I know life gets really busy for all…  but I want to praise the great team of volunteers whom with their passion are moving this organisation forward.  I personally look forward to the future in bringing more awareness and support to other families with ED.