Madeline Holt with her mother, Meagan
Madeline Holt is a bubbly, positive 3-year-old who likes to cuddle, listen to music, play with blocks and cars, and, in typical toddler fashion, do what she wants to do when she wants to do it. She is also strong and determined to beat all odds stacked against her.
At age 1, Madeline was diagnosed with Zellweger syndrome, a rare genetic condition that destroys the white matter in her brain. The condition leads to a number of other complications, including seizures, respiratory problems, liver failure and even brain hemorrhages. Most children with Zellweger syndrome do not live past 1.
There’s no treatment for Zellweger syndrome. Instead, caregivers at Seattle Children’s treat Madeline’s symptoms as they occur. Madeline is blind, has very limited mobility now and has a feeding tube. Despite these obstacles, she has mastered 50 different sign language signs.
“You learn to accept the disease for what it is,” said Meagan Holt, Madeline’s mother. “It’s terrible, but for today, she’s here and that’s all we care about.” Read full post »