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Wish for Willow- Help willow hear

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We have been given a possibility to give our daughter the gift of hearing through life changing surgery, Willow was born with a profound hearing loss of 85db and has a prospect of hearing through her own two ears for the first time in her life. An opportunity we never ever thought possible. Willow is a vibrant, sassy, adorable 5 year old girl who has a rare hearing condition called Atresia, meaning Willow was born with no ear canals in both ears. Something nature had forgotten to give her. Dr Joseph Roberson who is an internationally renowned specialist in Otolaryngology (ENT) from California Ear Institute was recently in Brisbane for a Microtia & Atresia Conference which we attended. We were able to meet with Dr Roberson and discuss Willows condition, Dr Roberson reviewed a CT scan Willow had and with confidence assured us he could repair her Atresia and get her hearing to a level that most people hear at normally. This was quite emotional to hear and then shock and excitement set in. Why America? The Californian Ear Institute is one of the only places focused on Atresia in the world, the desire for us as a family to get the most specialised care for our daughter for this challenging condition has made our decision to travel to the USA the only option, however it comes at extremely high costs of just over $110,000($55,000 per ear) not including flights, accommodation and a hire car per trip. The operation to have Willows Atresia repaired needs to be completed in two separate surgical procedures at six months apart. Willow is not allowed to fly in the immediate post op period of six weeks to allow time for the canal to heal and to be closely monitored for any potential infections. The complex surgery consists of a canal being drilled out with a high speed precision diamond head drill and lined with a skin graft taken from willows skull. Willow has been allocated her two seperate dates for surgery, 23rd April &1st Oct 2019. As you can see from our newly updated photo, willow has undergone her first Atresia repair surgery which as mentioned took place on the 23rd April 2019. This was able to happen due to many fundraising events and the reliance on our gofundme page. The first was a successful operation although Willow is still recovering. In a couple of months we will have a new audiogram completed which will show us the improved hearing decibel percentage. Willow has already for the first time heard an aeroplane fly over our house three days after surgery and she still has her ear canal filled with packing and sponges. Having Willow's second ear surgery is vital, some may say that having one hearing ear is enough, willow still will continue to struggle with directional hearing, soft sounds and noisy situations until she has full access to sound through two hearing ears, our ears work as pairs. So again time is of the essence for us to raise the money for Willow's second operation. Willow will start her first year of school next year and hearing needs to be restored during this critical period of development which occurs in the first 5 years of life. Willow’s current weekly schedule will continue, attending two speech therapy appointments, occupational therapy, early Intervention services and seeing her psychologist. Willow has missed out on important brain development that a normal hearing child is exposed to during the first few years of their life, this has resulted in Willow being severely delayed in her speech which makes it difficult to understand her and for her to get her needs across. We will hopefully now see a lot of positive results in Willow once her canal has time to heal. Onwards and upwards we say! For us as parents we have the chance to change what we thought was our story, raising a deaf child, we have been given a miracle in the name of a surgeon. Asking for help is out of our comfort zone and something we have never had to do, But! Something so close to our hearts and something that can make such a difference to our daughter’s life, as parents we will move heaven and earth to make this life changing miracle happen. The child that you help today could be the adult that changes the world. We want to truly thank you from the bottom of our hearts for your kind generosity. Lets give Willow the gift of sound and two working ears!

Organizer

Skye Powick
Organizer
Jolly Nose NSW

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