Priah's Journey

little Priah was born 5 April 2017 along with her Twin sister Morgan ,

At 6 months Priah was flown to Princess Margaret Hospital Perth and diagnosed with Craniosynostosis, and told she would have to undergo Major skull reconstruction surgery . Priah has endured so much and will continue to do so in her journey and a very long road ahead of her.   I have started this  Campaign to help raise much needed funds and support to go towards my Granddaughter Priah's  Incurring medical  expenses , which requires out of pocket  flights /travel fuel, motel/hotel  accommodation stays  which we all  know  staying in the city isn't a cheap experience especially for weeks on end because of hospital /specialist requirements for Priah's condition. 

"A baby's head, or skull, is made up of many different bones. ... When a baby is born, it is normal for these sutures to be open a little. This gives the baby's brain room to grow. Craniosynostosis is a condition that causes one or more of the baby's sutures to close too early."

Craniosynostosis is a condition in which one or more of the fibrous sutures in an infant skull prematurely fuses by turning into bone, thereby changing the growth pattern of the skull. Because the skull cannot expand properly it compensates by growing more in the direction parallel to the closed sutures. This growth pattern results in abnormal head shape and abnormal facial features and does not provide enough space for the growing brain. This leads to possible visual impairment, sleeping impairment, eating difficulties, or an impairment of mental development combined with a significant reduction in IQ.

She will undergo major surgery in Perth WA , on 7 March 2018
called a Cranial Vault Remodel (CVR). Her skull will be removed, cut up and reconstructed. This will allow more room for her brain to grow and develop and give her skull a more normal appearance
. She will also have extensive pre-op and post-op appointments and procedures including CT scans under general anaesthetic and consultations and tests with an Ear Nose and Throat Specialist, an Ophthalmologist, a Neuro Surgeon,  a Geneticist and Craniofacial Surgeons.
We had to relocate closer to Perth, to be closer to specialists , family, and Hospitals for Priah to have her upcoming surgery/s  and she will continue to be seen regularly by these specialists until adulthood.    Being a single mum of Twins is no easy feat, but when something like this is dealt at them, they need all the love, support and help to give this little warrior the best chance /quality at life she can get.   This also means Priah will be separated from her twin sister Morgan,   for weeks  and her Family , but Their mummy not having to be with both girls  as she has to leave one of the baby's  behind  with family or friends :/   

We greatly appreciate all the Support, and  hope to raise much needed Funds   to help towards Priah's Journey .
we also ask to show your support by sharing this awareness of Craniosynostosis with your friends and family. 

Please help my baby granddaughter , Many thanks from the bottom of our hearts!