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Daily life is a struggle but we couldn’t imagine not having Connor in our lives. #Dravet Syndrome

On the 21st of January 2011, our beautiful little boy Connor was born. He was perfect in every way and had no issues what so ever. Connor wasn’t a particularly difficult baby, like any other newborn, he was reaching his milestones and all was great.

Then one night when Connor was about 4 months old, I was sitting in his room feeding him, when suddenly he started making a funny noise and his eyes were rolled back,

I went crazy and woke my husband up. We rushed to the hospital, when we got there Connor had been seizing for about 20 minutes now and he was going blue. The trauma team worked on getting him breathing again and the paediatrician on call said Connor could have #meningitis and they needed to do a spinal tap on. That broke my heart to see my poor baby in that state and all I could remember is how much I cried!That night the doctor told us that it was a complex febrile seizure and it probably won’t happen again, Connor stayed in ICU for one night then went home.

A month later and the same thing happened, I couldn’t believe it was happening all over again, and again they told us it was just a febrile seizure. Almost every few weeks Connor would have a seizure and we would rush him to hospital for them to administer Valium to stop his seizures. When he was 7 months old the doctors did a MRI but nothing came up so they sent us to a specialist in Cape Town where she diagnosed him with #DravetSyndrome. At first I wasn’t too worried as we didn’t really know much about it but after doing some research I realized how serious his condition really was. Dravet syndrome is caused by a mutation of a gene and is extremely rare. Seizures start in infancy and become worse with age as they start becoming resilient to medication. With the seizures also comes delayed development and low muscle tone.

Connor also has speech problems and even though he is 7, he acts like a 4 year old. From about the age of 13, most sufferers develop an abnormal gait and could end up in a wheelchair and they have a height mortality rate due to SUDEP, that’s why we have a seizure monitor under his mattress so if he has a seizure at night, an alarm

will sound. One of my biggest fears was going into Connor’s room in the morning and find him dead because he had a seizure in the night. A lot of children have died like this and it makes me so worried.Despite all of Connor’s problems, he is such a happy little boy and everyone that meets him falls in love with him and his little personality. He is a real little character and makes us laugh all the time. Some days are better than others, Connor can be very difficult and it’s not easy for us as a family to do normal family things like go on holiday or eat out as Connor gets over whelmed very quickly. He also doesn’t sleep well so we are permanently tired.Daily life is a struggle but we couldn’t imagine not having Connor in our lives, he is very very much loved and we hope one day we’ll find a cure.

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