Welcome to Orla’s blog. January 23rd 2013 is the official launch date, as on this day Orla was admitted to the Royal Children’s Hospital (RCH) in Melbourne for surgery in preparation for a Bone Marrow Transplant next month.
Our journey began a couple of days after Orla’s birth and has lead us on an entirely different path of parenthood to that we could have ever imagined, but hey, that in itself is the very essence of parenthood. One of Orla’s doctors once said to me when we were still grasping for answers on the merry-go-round of specialist appointments, you just never know what you are going to get and he is so right! Nonetheless, you can’t give them back nor would you want to.
My husband Ed and I are scared in a way that is hard to describe, the nervous feeling can’t be suppressed but we have to face these fears as there is hope and that is more powerful than fear.
The aim of this blog is to share our journey with our friends and family and anyone who needs or would like to know more about Orla’s condition Alpha Mannosidosis.