Deacon's Journey

On 18th April 2016 Brad and I were blessed with another son, Deacon, a gorgeous little brother for Curtis.

We were anxious about his birth and meeting him as when I was 20 weeks pregnant we were told that there was something wrong with Deacon. At first they thought it was Trisomy 13 or 18 which is a fatal condition (only 50% of babies are born alive and of this 50% only 1% make it to their 1st birthday). We were referred to a specialist in Tasmania, who could not confirm what was wrong, so she referred us to Melbourne.  

We had to make 7 trips to Melbourne during the last 4 months of my pregnancy to meet with specialist, have ultrasounds and also an MRI on Deacon's brain. At 24 weeks Deacon was diagnosed with a rare medical condition called Apert Syndrome. This meant that the sutures on both sides of Deacon's skull had fused already and therefore meant that his brain could not grow normally as his skull could not mould like a normal babies skull. This means that his brain grows up causing his skull to also grow up. This syndrome also meant that his fingers and toes were fused together. We were also told that there was 50% chance that he could have some form of intellectual disability ranging from mild to severe. We were confronted with decisions we did not want to have to think about. Based on all the information we were given there was no other decision then to bring our gorgeous boy into the world and love him just as much as our first, Curtis, and give him the best life possible.  

I was booked in for a cesarean 8 days before my due date. Deacon had other ideas and decided he was going to make his entrance into the world on his terms. I went into the labour the day before my planned cesarean which meant I had to have an emergency cesarean (as his skull could not mould I could not have him naturally). We fell in love as soon as we meet him and knew we had made the right decision.  

Now begins our long journey to give Deacon the best life possible. Deacon will require multiple surgeries on his skull and hands. With the first one to be around 6 months to separate his thumb and little finger. There are 3 types of fusing with Apert Syndrome. Deacon has Type III which is the most severe and will most likely mean that he will only have a thumb and 3 fingers on each hand. His first skull surgery will most likely be around 8 months. After this he will have multiple surgeries between the age of 1 and 2.   

Although Deacon's surgeries are covered we do face a lot of expenses ranging from travel to Melbourne (the surgeries cannot be done in Tasmania), accommodation and food whilst in Melbourne, medications and a lot of unpaid leave from work for both myself and Brad. At this stage only one of us will be able to afford to go to Melbourne for each surgery which is not ideal because, as with any surgery, there are risks involved and given that he is so young and the procedures he requires these risks are higher. Neither of us want to be the one left behind especially if something should go wrong as we would never forgive ourselves.  

We would like to try and raise some money so that we are both able to be there when Deacon has his surgeries. Any money raised will assist in paying for travel, accommodation, food, medications and mortgage for the times we require unpaid leave. Thank you for your support.