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LoveQuilts Australia - Samara L's quilt

Samara L's quilt   (Quilt Coming Soon)

Born:September 2008
Illness: Trisomy 21

Theme: Princesses and Babushka Dolls


Quilt will open soon, keep checking back!
Photo of Samara L

Child Interests

Favourite colour is either pink or purple (ormthe two together!
She loves princesses, dolls (especially "big girl dolls" and babushkas).
She is also a Wiggles fan, although their colours don't necessarily work!
She is also a fan of sea creatures. I thinkbecause she would live in the water if she could! But her aspiration risk makes that difficult.


Biography

Samara was born at 31 weeks gestation after a very traumatic birth. At 4 weeks she was diagnosed with Trisomy 21. At 5 weeks with Laryngamalacia. She came home at 11 weeks old on NG tube. After many pneumonias (she spent every second weekend in hospital in the early years), she developed bronchiectasis. In addition to this, she also has a poor swallow, so is at high risk of aspiration.
At about 16 months it was also discovered her upper right lobe in her lung has never inflated.
At 2 she was diagnosed with a hearing loss which has been slowly deteriorating ever since.
At 3 we finally managed to get a sleep study done, and she was diagnosed with severe obstructive sleep apnoea. She now has to be on CPAP for all her sleep time.
She has also been diagnosed with Ehlers Danlos Syndrome and left hemiplegia Cerebral Palsy.