Angels For Aria
Donation protected
Aria was born in February 2014, we thought all our dreams had come true, having a little baby girl that I particularly had always dreamed of having. After a perfect pregnancy, It was a very bumpy ride right from day one. Deep down we just knew there was something not quite right, but the doctors kept on doing tests and everything kept coming back normal. I felt like I was losing my mind, I knew there was something they were missing. So I ended up taking Aria up to the children’s hospital in Brisbane when she was about 5 months old, and it was after an MRI that they found the issue and eventually diagnosed Aria with Aicardi Syndrome. That day our world fell apart. Our precious little baby girl was going to be dealing with life long issues that neither of us could fix for her. It did take us months if not years to get our heads around what we had been dealt and how we were going to deal with it moving forward.
Aicardi Syndrome is an extremely rare genetic disorder affecting around 4000 girls worldwide. Which means there is practically no supports groups specifically aimed at Aicardi Syndrome in Australia.
Aria has a lot of things to deal with in her life. Impaired vision, hearing loss, non verbal, developmental delays, poor feeder, scoliosis and a dislocated left hip are some of the daily things we are dealing with but she is one tough little girl. She has always shown us signs of being a fighter, and we also are fighting in her corner for a better quality of life for Aria. Aria currently sees a group of specialists and paediatric therapists which all comes with an expensive price tag.
Arias week is always busy with doctor and/or hospital visits, therapy appointments, and special school. All of which are an expensive necessity in her life.
We are also faced with residence issues. Both myself and Wayne are New Zealand citizens (living in Australia for 9+ years now) so even though Aria was born here in Australia, because we are not Australian citizens, nor can we apply to be due to the citizenship laws being changed in 2001, we are not entitled to any funding, respite, careers benefits, disability grants, NDIS and many more things. This makes our financial situation a real struggle. Not to mention the fact we are also away from all of our Family. Yes this makes it hard on us, we don’t have any extra support but we love living here in Australia, we brought a beautiful home here in Queensland six years ago so we don’t want to give up our dream of living here. But as you can see all these factors make a very hard financial burden for us. I would love to be able to stay at home and care for Aria but its just not possible with so many therapies, equipment and treatments to pay for. And now as Aria gets older and bigger her needs are getting bigger too.
Aria is now five and is a happy little girl, she is always smiling and giggling and showing signs of being a cheeky little girl. She has a beautiful smile that lights up her whole face and anyone around her. Aria loves bath time and swimming, reading, swinging, riding bikes and being pushed around in cars, anything with wheels really. She loves being around other children and people in general. Aria has recently learnt to ride a trike, which is really delightful to watch her move around with no help from anyone else. And with lots of practise Aria can now stand and walk, with support of her walking frame but she absolutely loves walking and is so proud of herself, as we are too watching her reach this mile stone. We are positive that aria will walk one day.
Aria has scoliosis of the spine and has to wear a torso jacket 24/7. This will hopefully slow the progression and buy us time before she will need a spinal operation.
Aria has had far to many operations already in her short life and unfortunately will face many more in her life time. it is heart breaking watching your child go through so much, especially when she doesn't fully understand.
We are very appreciative of any support and any donations made. With your help we can give Aria the extra help she needs.
We thank you from the bottom of our hearts for your donations and support to help our little princess.
Wayne, Regan & Aria.
Aicardi Syndrome is an extremely rare genetic disorder affecting around 4000 girls worldwide. Which means there is practically no supports groups specifically aimed at Aicardi Syndrome in Australia.
Aria has a lot of things to deal with in her life. Impaired vision, hearing loss, non verbal, developmental delays, poor feeder, scoliosis and a dislocated left hip are some of the daily things we are dealing with but she is one tough little girl. She has always shown us signs of being a fighter, and we also are fighting in her corner for a better quality of life for Aria. Aria currently sees a group of specialists and paediatric therapists which all comes with an expensive price tag.
Arias week is always busy with doctor and/or hospital visits, therapy appointments, and special school. All of which are an expensive necessity in her life.
We are also faced with residence issues. Both myself and Wayne are New Zealand citizens (living in Australia for 9+ years now) so even though Aria was born here in Australia, because we are not Australian citizens, nor can we apply to be due to the citizenship laws being changed in 2001, we are not entitled to any funding, respite, careers benefits, disability grants, NDIS and many more things. This makes our financial situation a real struggle. Not to mention the fact we are also away from all of our Family. Yes this makes it hard on us, we don’t have any extra support but we love living here in Australia, we brought a beautiful home here in Queensland six years ago so we don’t want to give up our dream of living here. But as you can see all these factors make a very hard financial burden for us. I would love to be able to stay at home and care for Aria but its just not possible with so many therapies, equipment and treatments to pay for. And now as Aria gets older and bigger her needs are getting bigger too.
Aria is now five and is a happy little girl, she is always smiling and giggling and showing signs of being a cheeky little girl. She has a beautiful smile that lights up her whole face and anyone around her. Aria loves bath time and swimming, reading, swinging, riding bikes and being pushed around in cars, anything with wheels really. She loves being around other children and people in general. Aria has recently learnt to ride a trike, which is really delightful to watch her move around with no help from anyone else. And with lots of practise Aria can now stand and walk, with support of her walking frame but she absolutely loves walking and is so proud of herself, as we are too watching her reach this mile stone. We are positive that aria will walk one day.
Aria has scoliosis of the spine and has to wear a torso jacket 24/7. This will hopefully slow the progression and buy us time before she will need a spinal operation.
Aria has had far to many operations already in her short life and unfortunately will face many more in her life time. it is heart breaking watching your child go through so much, especially when she doesn't fully understand.
We are very appreciative of any support and any donations made. With your help we can give Aria the extra help she needs.
We thank you from the bottom of our hearts for your donations and support to help our little princess.
Wayne, Regan & Aria.
Organizer
Regan Ball
Organizer
South Stradbroke QLD
