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Home > Rare Kids Art Gallery

Penny is a beautiful, lively child who has two rare genetic conditions not believed to be related. She was diagnosed at 12 months old with Congenital Central Hypoventilation Syndrome (CCHS) which is an autonomic nervous system disorder which effects her breathing when sleeping, amongst other symptoms. She sleeps connected to a ventilator. Penny also has a condition known as McCune Albright Syndrome (MAS) which causes a fibrous growth in the bones in the left side of her face and head.

Zoe has Metachromatic Leukodystrophy. She had a bone morrow transplant at four months old to slow disease progression down. Zoe is a happy girl who loves rainbows, cats, her toy bunnies, butterflies, the colour yellow, art and craft, camping and the beach.

Daniel has rare chromosome duplication he has Development delay Speech delay - this was done by his sibling

Penny is a beautiful, lively child who has two rare genetic conditions not believed to be related. She was diagnosed at 12 months old with Congenital Central Hypoventilation Syndrome (CCHS) which is an autonomic nervous system disorder which effects her breathing when sleeping, amongst other symptoms. She sleeps connected to a ventilator. Penny also has a condition known as McCune Albright Syndrome (MAS) which causes a fibrous growth in the bones in the left side of her face and head.

Daniel has rare chromosome duplication he has Development delay Speech delay

Zoe has Metachromatic Leukodystrophy. She had a bone morrow transplant at four months old to slow disease progression down. Zoe is a happy girl who loves rainbows, cats, her toy bunnies, butterflies, the colour yellow, art and craft, camping and the beach.

Becky - FOXP1

Sawyer - 10 has 15q Overgrowth Syndrome. Most beautiful boy with very little behavioural problems and a desire to know everything about everyone and be friends with everyone. Breaks my heart that his ability to talk means noone can understand him! He was so excited when I hired a 15 yr old 'communication mentor' to hang out with him. I have this picture in pride of place in my living room. I'm so happy he is so happy here.

Daniel has rare chromosome duplication he has Development delay Speech delay - this was done by his sibling

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