Inside story: How a family Fights for her Ailing, live 5-year-old daughter Every day

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Posted by: Newswalle

Although much attention has been on extraordinary conversations about Michelle’s death the moon with it, ill terminal 5 years, the daughter Julianna snow last year, every day takes an equally incredible amount of effort to save his life.

Julianna, the doctors say that he has a rare aggressive form of the disease Charcot-Marie-Tooth (CMT), connected breathing machine called BiPAP 24 hours a day through a mask over your mouth and nose.

Your disease has a slowly he took his mobility, so they are only able, move the shoulders a bit.

Michelle, 43, a neurologist, gets up at 5:30 in the morning every day to his daughter gastric probes, while you still slept.

After Julianna to Wake up between 6:30 and 7 am, she and her husband, Steve snow, 38, who is Julianna to do the exercises, after which you begin a number of procedures airway to help her breathe, lasts about an hour.

She also gets suctionioning everything to excess mucus.

Michelle, who works four days a week, but it takes a vacation so that you can achieve a full working day-wages, WS, at 8 am, and then, Steve, a veteran of the air force of the United States of AMERICA, assumes.

After their morning routine, Steve Yulianna helps to brush your teeth, get your dress, and steroids they are taking their medications: anti-nausea medications, antacids and an inhaler. Steve has also regularly races – your supply lines.

“These ‘tasks’, as we call them,” she says, then he adds, laughing: “to dress in reality, this is a challenge for you – something you don’t play, the task”.

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