Please Help My
Mummy & Daddy
Get Me To Chicago
Mummy & Daddy
Get Me To Chicago
Hello:
Welcome!
My name is Natasha, i,m 15 months old, my
Mummy is called Natalie and my Daddy is Ian. My
Mummy is on a career break from the Civil Service
and my Daddy is an Engineer. They both met at
Kirkistown at the time when they both races
Motorbikes. My Daddy competed in the Irish
Championships while Mummy did it for fun.
Overview
My mummy and daddy have created this website
to raise awareness of my condition and to tell
everyone why I need special treatment in
Chicago as soon as possible as they are trying
very hard to give me the best chance at life. Time
is becoming more crucial for me.
I was born on 10th March 2007 and have spent
most of my life in hospital, with lots of different
wee problems, below my mummy has written a
wee bit about my life so far.
My name is Natasha, i,m 15 months old, my
Mummy is called Natalie and my Daddy is Ian. My
Mummy is on a career break from the Civil Service
and my Daddy is an Engineer. They both met at
Kirkistown at the time when they both races
Motorbikes. My Daddy competed in the Irish
Championships while Mummy did it for fun.
Overview
My mummy and daddy have created this website
to raise awareness of my condition and to tell
everyone why I need special treatment in
Chicago as soon as possible as they are trying
very hard to give me the best chance at life. Time
is becoming more crucial for me.
I was born on 10th March 2007 and have spent
most of my life in hospital, with lots of different
wee problems, below my mummy has written a
wee bit about my life so far.
 | Born 10th March 2007, 38Wks. | |
| Weighed 6 lbs, 10 oz. | |
| Always Smiling! | |
| 10th March 2007 |
| Natasha's Journey of Hope |
Natasha is 15 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 baby 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 is 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 15 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. |
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