ozED

When our son was born he had 10 fingers, 10 toes, everything was great. As he grew I noticed he wasn’t getting teeth. He would be fine one minute and the next minute he would have high temperatures. As new parents we put this down to teething but the teeth never came. When he was nearly 3 I went to my local dentist as I needed a check up and I asked him if Jack should have teeth by now, what was wrong, why didn’t he have teeth? My dentist said he “knew of something but it probably wasn’t that, that was worst case scenario. Let’s do some X-rays and find out” Well we did X-rays and worst case scenario

The McCulloch Family Story ‘I don’t think he will get any teeth and I think he might have a condition called Ectodermal Dysplasia.’ Those words changed our lives forever. Owen was born in 2004. He was a quiet, beautiful baby; perfect in every way. He was 3 weeks early and went into the special care nursery because he had a slight temperature. He stayed the required 72 hours with negative tests. The hospital policy at the time required that we re-attend to see the paediatrician for a review. The paediatrician was lovely and noticed something about Owen straight away, but unfortunately she didn’t know about ED. She asked us to start looking at our family history and send Owen for

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