Baby Everley’s family needs our help to help Everley

Posted on: October 26, 2016

***VIEWER DISCRETION IS ADVISED***

Everyone is use to seeing this bright beautiful little girl with big smiles, laughing and playing. What you don’t see behind closed doors is what we actually live with day to day. Not once but multiple time per day. Everley has pass out spells or as we call them “blue spells”. When our daughter cries, she holds her breath and passes out. She needs to be bagged and resuscitated every-time she has a blue spell. Now it’s not uncommon. Some children do this as we speak but in our case, if Everley falls asleep, passes out, or even gets knocked out….. Our child will die! With her condition, her brain tells her to stop breathing when she has an unconscious mind. Needing a ventilator when she’s sleeping and eyes on her 24/7. Right now Sarah and I are paying $2100 a week to keep our child at home. We have been patiently waiting for CCAC to step up and help us with funding but it’s a constant struggle. Basically waiting for someone from behind a desk to make a decision. Letting them be the judge if we need the direct funding OR not. I will guarantee if they were put in our shoes they would understand how complex this really is. Everytime I have to recesitate my daughter, there is always a chance that this could be the last time. The last time I get to hold her, smile with her, care for her. This hole in the system is disappointing and frustrating and hopefully we pave a path for other family’s who need specialized care. Our child is rare but so full of life, we want to keep our child at home. She deserves it. Especially with everything she has gone and going through. Thank you everyone who has supported us. It keeps my daughter home and my family together #everleystrong