We live in Bangalow in regional NSW with our three daughters Harper 7yrs, Sadie 5yrs and our very special newest addition Charlie who is now 11months old.
Charlie was in a hurry to meet everyone and was born a month early and spent sometime in the special care unit on the Gold Coast. Shortly after her birth we were informed that Charlie had permanent moderate hearing loss that would require aids for the rest of her life, in addition to this she would need to undergo extensive tests to find out why she was moderately deaf. We then spent the next few months travelling back and forth to a Brisbane for testing during which time she was found to have an extremely rare pituitary brain cyst that was causing her to have low thyroid hormone levels and pressing on her optic nerves putting her vision at risk. We were then referred to Professor Brian Owler at Westmead Childrens Hospital in Sydney where she underwent a craniotomy at only 4 months of age. Unfortunately a few months later in a repeat scan this growth was found to have completely regrown and she has not grown due to a growth hormone deficiency and now has developed another rare congenital brain malformation called a Chiari 1 malformation.
On advise from all the specialists involved in Charlie’s care the decision to try and remove this pituitary growth again has been made and she is booked to have another craniotomy at Westmead in a couple of weeks.
Charlie’s care is extremely complicated requiring ongoing reviews from paediatric neurosurgeons, endocrinologists, Opthalmologist’s, ENT surgeons, radiologists and audiologists. Due to the rareness of these congenital problems all of these specialists are in Sydney where her care can be coordinated.
Not just the on going cost of travel and accomodation but the large amounts of time we have had to spend away from our other two daughters in undergoing treatment for Charlie has made living in a regional area extremely difficult.
We were advised to contact Wings4kids through Charlie’s therapist from the Royal Institute of Deaf and Blind Children and although we have only had the privilege of using this service once it has made all the difference.
Simply knowing that there are people willing and able to help us with the logistics of travelling to and from our many hospitals stays and appointments means we can spend more time as a family caring for Charlie during times of extreme stress for us all.
As a regional family the value of such a service can not be measured.
Signed: Phoebe Rose
