Steven Snow's mild case of Charcot-Marie-Tooth disease has manifested as a severe case in his daughter Julianna.
Steven Snow's mild case of Charcot-Marie-Tooth disease has manifested as a severe case in his daughter Julianna.
AUBRIE LEGAULT
Julianna Snow, 5, is dying of an incurable disease. Counseling has helped prepare her brother, Alex, for his younger sister's death. He asked if his mom's heart would stop beating when his sister dies because she will be so sad.
Julianna Snow, 5, is dying of an incurable disease. Counseling has helped prepare her brother, Alex, for his younger sister's death. He asked if his mom's heart would stop beating when his sister dies because she will be so sad.
AUBRIE LEGAULT
Julianna, who has Charcot-Marie-Tooth disease, once had nearly full use of her arms, but now can't even hold a small toy without help. Her mother, Michelle Moon, brushes her teeth.
Julianna, who has Charcot-Marie-Tooth disease, once had nearly full use of her arms, but now can't even hold a small toy without help. Her mother, Michelle Moon, brushes her teeth.
AUBRIE LEGAULT
Julianna spends nearly all her time in her "princess" room. Sometimes she pretends her bed is a magic carpet.
Julianna spends nearly all her time in her "princess" room. Sometimes she pretends her bed is a magic carpet.
AUBRIE LEGAULT
If Julianna gets sick, Michelle says she will ask her again if she wants to go to the hospital or heaven, and "we'll honor her wishes."
If Julianna gets sick, Michelle says she will ask her again if she wants to go to the hospital or heaven, and "we'll honor her wishes."
AUBRIE LEGAULT
If she gets an infection, she says she wants to die at home instead of going to the hospital for painful treatments that are unlikely to save her. Julianna asked if her brother, Alex, would go to heaven with her when she dies. <br />
If she gets an infection, she says she wants to die at home instead of going to the hospital for painful treatments that are unlikely to save her. Julianna asked if her brother, Alex, would go to heaven with her when she dies.
AUBRIE LEGAULT
Julianna is rarely without her breathing mask.
Julianna is rarely without her breathing mask.
AUBRIE LEGAULT
A pressurized mask pumps air into Julianna's lungs. An incurable neurodegnerative disease has attacked the nerves that control her muscles, including those that control her breathing.
A pressurized mask pumps air into Julianna's lungs. An incurable neurodegnerative disease has attacked the nerves that control her muscles, including those that control her breathing.
AUBRIE LEGAULT
Julianna loves to wear colorful dresses and have her nails painted.
Julianna loves to wear colorful dresses and have her nails painted.
AUBRIE LEGAULT
At one point, Julianna ate food, but now her chewing and swallowing muscles are so weak she's fed through a tube in her stomach.
At one point, Julianna ate food, but now her chewing and swallowing muscles are so weak she's fed through a tube in her stomach.
AUBRIE LEGAULT
Initially, Julianna's parents arranged for braces on her ankles and feet in hopes she might walk one day, but now they say they know that day will never come.
Initially, Julianna's parents arranged for braces on her ankles and feet in hopes she might walk one day, but now they say they know that day will never come.
AUBRIE LEGAULT
Julianna shows no envy toward Alex, who can race up and down the hallway and do martial arts.
Julianna shows no envy toward Alex, who can race up and down the hallway and do martial arts.
AUBRIE LEGAULT
Michelle reads to Julianna. Her mother has made sure Julianna understands that going to heaven means "dying and leaving this Earth." She also told her it meant leaving her family for a while, but they would join her later.
Michelle reads to Julianna. Her mother has made sure Julianna understands that going to heaven means "dying and leaving this Earth." She also told her it meant leaving her family for a while, but they would join her later.
AUBRIE LEGAULT
Michelle, Julianna, Steve and Alex spend time together in the family's living room.
Michelle, Julianna, Steve and Alex spend time together in the family's living room.
AUBRIE LEGAULT
Steven Snow's mild case of Charcot-Marie-Tooth disease has manifested as a severe case in his daughter Julianna.
Steven Snow's mild case of Charcot-Marie-Tooth disease has manifested as a severe case in his daughter Julianna.
AUBRIE LEGAULT
Steven Snow's mild case of Charcot-Marie-Tooth disease has manifested as a severe case in his daughter Julianna.
Steven Snow's mild case of Charcot-Marie-Tooth disease has manifested as a severe case in his daughter Julianna.
AUBRIE LEGAULT