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Help for Jake

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12.01.2022 well we got confirmation yesterday that Jake will need surgery on his poor lil eyes, his left eye is severely damaged due to him not being able to close his eyes, this has caused blood vessels to grow just below the pupil and eventually he will go blind, the cornea is thinning and both eyes have dry spots. The operations will hopefully slow this process down. The specialist has treated adults with PRP but Jake is the first child so it was very cool to talk to him about it! It will now take a few months to get a specialist surgery team together as they have to consult Jakes cardiologist and consult a dermatologist. They will do the left eye first, let that heal then go back for the right eye.

09.01.2022 Jakes new 'going out' tshirt, hoping it will stop the stares and encourage positive communication

03.01.2022 Today is Rare Disease Day, a day when patients, parents and caregivers come together and are recognised for living with or caring for someone with a rare disease, there is currently 6000 registered rare diseases in Australia. This years theme is 'Living with a rare disease - day by day, hand in hand'. I am a little disappointment that there was nothing here on the Gold Coast to bring us together, I would like to hope that next year I can change that!! (Can you spot Jake in the middle)