BiographyNatasha was born at 38 weeks, weighing 6lb 10oz, but when she arrived into this world she had to be resuscitated and immediately she was taken to the Special Care Baby Unit (SCBU).
At two weeks old Natasha was diagnosed with a rare chromosome disorder 18q-, which in genetic terms means that the long arm of the chromosome 18 is missing. We weren't given much hope but we remained positive for Natasha, it was a shock too in the beginning but we quickly adapted to Natasha's needs. The condition is so rare that Natasha is one of only four kids worldwide who have the Mosaic form of 18q-.
Since Natasha's diagnosis a swallow study has shown she was aspirating fluid into her lungs, this caused her to lose colour and is potentially life-threatening. The safest option for our little girl was for her to be Tube Fed and treated with medication to reduce acid in the stomach to help prevent reflux.
Natasha also suffers re-occuring chest problems and was ventilated in January 2008 with Pneumonia.
Our biggest concern is Natasha's Epilepsy. Natasha suffered severe Epilepsy, having seizures daily, as many as 19 in an 8 hour period. We are currently in Chicago at Children's Memorial Hospital where they are bringing her Epilepsy under control. At the moment through sleep, Natasha's Oxygen levels are dropping and heart rate increasing, she was admitted to Central Dupage at the end of July for a sleep study to investigate.
Although Natasha has been through alot in her tiny little life she is a very happy , content little girl who loves cuddles.
We cannot imagine life without Natasha, she has brought us so much joy with her own wee personality, she means the world to us.
Update August 24th 2008
Natasha was admitted to Intensive Care on August 3rd with vomiting and breathing difficulties relating to a virus, she had a G tube fitted for feeding and requires oxygen throughout the night while sleeping.
Natasha's Epilepsy is now under control, no more seizures, we continue to pray that's the end of them. She continues intense therapy daily to encourage development. Since coming home to Chicago Natasha is now rolling from her back onto her stomach, playing with her hands and putting them into her mouth, she is gaining more head control and currently working on Trunk to enable sitting - hopefully.
You can read more about Natasha on her website www.natashafalls.com
Written by Natasha's mum Natalie.
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(Quilt Completed)
