Please Help My
Mummy & Daddy
Get Me To Chicago
Hello:
Welcome!

We  would just like to say Hello to anyone
visiting Natasha's website. My name is Natalie,
i'm Natasha's mummy, i'm on a career break
from the Civil Service and Ian is her Daddy, he
is an Engineer.

Overview

The main aim of Natasha's website is to raise
awareness of Natasha's condition and to
emphasise why we need to get Natasha to
Chicago as soon as possible to give her a
better chance at life.

Natasha was born on 10th March 2007 and has
spent most of her life in hospital, below is a
brief outline on Natasha's life so far.
Born March 10th, 38Wks.
Weighed 6 lbs, 10 oz.
Always Smiling!
10th March 2007
Natasha Falls
Journey of Hope
Counter

Natasha is 13 months and is an inspiration to us all! Born 10th march 2007, Natasha has spent most of her life
in hospital.

Natasha was born at 38 weeks, weighing 6lb 10oz, but when she arrived into this world, there wasn't a noise,
the room just fell silent. All we longed for was to hear that cry but we knew something was wrong. Our Precious  
little baby was being resuscitated and immediately she was taken away from us to the Special Care Baby Unit
(SCBU). Time passed so slowly, six hours later a doctor came back to us, we found out Natasha was still
breathing but where told that there had been some featural defects noticed on her hands, that her left foot was
pointing inwards and some further tests had to be carried out on Natasha.

From that moment, our hearts sank. We were terrified of losing our precious little girl and all everyone could
say was to take it one day at a time.
Day after day, it was one long blur but eventually some results arrived back and they diagnosed Natasha with a
Rare Chromosome Disorder and we were then referred to a Geneticist right away.

The Geneticist first met us at  SCBU, he diagnosed Natasha  with 18q-, which in genetic terms means that  the
long arm of the Chromosome 18 is missing. We weren't given much hope. We were told that Natasha may
never walk or talk and to this day we still don't know what her life expectancy may be, we were also told that she
would not look like either mummy or daddy which i can definitely disagree with up to now.
The condition is so rare that Natasha is one of only four kids worldwide who have the same form of 18q-. As a
result, the doctors are unable to tell us much and, to be honest, it has been down to us to do the research and
provide them with feedback. There is a link above to the Chromosome 18 Registry and Research which
explains a little more on Natasha's condition - Chromosome 18q-.

Since Natasha's diagnosis a swallow study has showed she was aspirating fluid into her lungs, this caused her
to lose colour and was potentially life-threatening. The safest option for our little girl was for her to be NG
(Nasal Gastric) Tube fed and treated with medication to reduce acid in the stomach to help prevent reflux.
Natasha also has re-occurring chest problems and has been admitted with RSV and Corona Virus, both
respiratory viruses, she was admitted to ICU in January 08 with Pneumonia and ventilated for 4 days, thankfully
pulled through but continuing to have problems with her chest and lungs.

The Reason Behind Getting Our Little Girl To Chicago

The last 13 months has been a hard battle for Natasha, during this time having multiple seizures. As many as
19 seizures over a 8 hour period. Natasha suffers from having seizures daily, a recent EEG showed a dramatic
change for the worse, meaning that there is alot more activity in the brain putting Natasha at more risk of brain
damage, having more severe/complex seizures means it increases the risk of Sudden Death in Epilepsy, this is
our biggest fear before we get Natasha to Chicago for treatment. We are pleading with as many people as
possible to come forward and help us make this journey of hope for Natasha.
Please enter our fundraising page for more details.