support Sophia (Sophia Grace Iles)

Our precious daughter Sophia Grace Iles was born on the 13-1-14 in Hobart. Sophia was born with a very rare genetic condition called Aperts syndrome which occurs roughly one in approximately two hounded thousand births. Basically what Aperts does is that during pregnancy the FGFR2 gene on chromosome 10 sends incorrect messages to the cells in the skull causing an over activity that basically causes the back of her skull to fuse together. It also causes other growth issues in the skull such as smaller nasal cavity, unusual shaped eye sockets and also some other gaps in the skull and an enlarged forehead. Aperts also has another common issue and that is the fusing or webbing of fingers and toes causes this time by a lack of signal to the cells by the same gene code. Although each case is different in severity all Aperts people have these common signs. In Sophia's case she had particular trouble breathing and at was sent via air ambulance to the Royal Children's Hospital in Melbourne at just ten days old. Whilst in Melbourne Sophia's breathing worsened and as a result after two failed nasal surgeries the doctors were left with little choice but to perform a tracheostomy on her. Sophia came home with us on the fifth of March after being in Melbourne for 6 weeks and almost 8 weeks old when we finally brought her home. As a result of Sophia's tracheostomy she requires her trachy to be suctioned often, from every few minutes to once an hour whilst asleep. She also sleeps on a stats monitor so as to monitor her heart rate and oxygen levels to ensure they are correct. It also helps us to know when Sophia is awake at night as she can't make a sound as a result of her trachy. Sophia also feeds through an oral gastric tube, which is a feeding tube that goes into her mouth and into her stomach. Sophia requires her trachy tube to be changed once per week and more often if she becomes really blocked or has a cold. She also requires her feeding tube to be replaced several times daily as she quite often has problems tolerating her feeds and in turn regurgitates her food and her tube. As you can read above Sophia requires 100% care and attention all day and night and can't be left alone as she can stop breathing quite quickly if her trachy becomes blocked. This is highly stressful and also means that one parent has to remain with her at all times whilst the other is at work. Making things very difficult to live off one income whilst we are only entitled very very limited government entitlements and still paying a mortgage things are quite difficult. Sophia also will have to have somewhere between 20-60 surgeries before she turns 18 years of age. She has already had 3 and has more planned at 6,9,12, 18 and 23 months as well as several others along that time also and a massive surgery at 4 years where her entire mid face is moved and re shaped. All of her surgery has to occur in Melbourne and the stay is often weeks at a time so as she can recover before travel. Although one parents airfare is paid for, accommodation, meals and general living expenses are all up to the parents to pay for and with the expenses still occurring at home and with leave entitlements from work dwindling down fast the financial burden is quite harsh on the family So if you are able to help us in any way possible It is very much appreciated.