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LoveQuiltsUK - Amana J's quilt

Amana J's quilt   (Quilt Coming Soon)

Illness: Niemann Pick Type C

Theme: Flowers and Hearts

Quilt will open soon, keep checking back!
Photo of Amana J

Child Interests

Amana likes hearts and flowers. Her favourite colours are red, pink, purple


Amana was born prem at 36weeks and was normal. Then she became poorly and stopped feeding at 6 months. Jaundice was the only symptom. Lots of tests and skin biopsy confirmed devastating conditions. She has an enlarged liver and spleen. Amana has a progressive deteriorating condition. It affects her muscles causing ataxia and leading to poor balance and increased falls, strong emotions and laughs and causes her to suddenly collapse. She suffers from absence seizures. She is totally gastronomy fed via pump. Amana is non verbal and has developmental delay

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