Capreece’s Legacy #ourbeautifulcapreece #DonateLife #ANEawareness

 

Our story
Capreece Elle Wax 💜4/9/02~19/8/17
Our first born girl aged 14years passed away last year of ANE. She was a fit, healthy & a smart young woman, embracing life to the limits. With only 5 days notice, positive to Influenza B, flown to the Children’s hospital to ICU on the Tuesday night and Wednesday night she had stopped speaking and continued with seizures, her heart stopped twice with CPR given & never recovered or woke up, we were told she wouldn’t make it, the inflammation on her brain was severe – pronounced brain dead on sat 19th August. She donated 4 of her organs with surgery the following day which saved 3 lives. Genetic results showed she was negative to the RanBP2 gene. About to receive her autopsy results from her brain & spine on 14th August few days prior to her anniversary. We discovered Our Capreece first had ANE when she was 6 with an identical episode but at that time we didn’t know it was ANE, they called it Cerebelleitis (a virus of the brain) and she made a full recovery from a week in ICU and lived on to be a healthy young child.
Thought we should share our story since tomorrow is ANE international awareness day and it’s also Donatelife week. We can only take comfort in keeping our child’s legacy alive and sharing our precious memories and the very short but meaningful special life she gave us & everyone else she touched 💜 #ourbeautifulcapreece

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#ANEandUs  #RareDisease #ANEawarenessday #Influenza #cytokinestorm #braininjury #AcuteNecrotizingEncephalopathy  #patientstories  #FacesOfANE

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One thought on “Capreece’s Legacy #ourbeautifulcapreece #DonateLife #ANEawareness

  1. Capreece was a vibrant young lady, full of life, laughter and happiness. She was fit and health and a role model to all she meet. She inspired others to do their best and have fun doing it. Her loss is felt through the whole community and her family are so strong to continue her legacy and raise awareness to a disease that took away their beautiful daughter, sister, niece and cousin. Please share her memory and raise awareness. 💜 #4 #ourbeautifulcapreece

    Like

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