Maggie

Maggie: 8 in 2011

From: Australia

Symptoms:

– Small cerebellum

– Developmental delay

– Speech delay

– Maggie learned to walk / go about without the help of a walker or wheelchair in the last year

– Sensitive to loud noises- fireworks are the worst and even now she covers her ears at the movies.

– Maggie was diagnosed 12 mths- she was born at 36 weeks but wasn’t til she was 3 mths her parents noticed she was very floppy- didn’t have much muscle tone- didn’t latch onto the breast well either – also had feeding issues.

– Looking back now they remember more things- at her first chirstmas they took her to see the christmas lights and that night she screamed for three hours-

– At 4 months she had PT and then was placed into a EI group- we never looked back- at 12 mths her MRI was the turning point- they found out she had PVNH and is at hight risk of seizures but to date has not had any.

– She has cells that are in the wrong postition. 

– She can sign but her mom pick up on her wants.

-Maggie attends a special school three days a week and a mainstream school the other two and she enjoys both.

Diagnosis: PVNH confirmed by MRI