Hello:
Welcome!
My name is Natasha, i,m 2 years 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 raced
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 they are trying very hard to give me
the best chance at life.
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 2 years 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 raced
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 they are trying very hard to give me
the best chance at life.
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 2 years old 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, therefore we carried out a lot of research ourselves. 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 she was also diagnosed an Epileptic, suffering from as many as 19 seizures daily, lasting anything from 30 seconds to 30 minutes, putting her tiny life at risk. A swallow study carried out showed Natasha had added complications, 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 is for her to be fed via a G Tube (directly into the stomach) and treated with medication to reduce acid to help prevent reflux. Natasha also suffers from re-occurring chest problems and has been admitted with Pseudomonas, RSV and Corona Virus, all serious respiratory infections, she was also admitted to ICU in January 08 with Pneumonia & Pseudomonas where she had to be put onto life support for 4 days, thankfully pulled through with a fight, she still continues to suffer respiratory infections. In December we decided to take Natasha privately to Great Ormond Street Hospital to get to the bottom of what is causing her to fall ill so often with her chest and lungs, Dr Suri in GOSH is positive and is taking Natasha back as an inpatient to carry out further investigations, awaiting date. The Reason Behind Our Little Girls Campaign The last 2 years has been a hard battle for Natasha, during this time we have been faced with many tough decisions but Natasha being a determined little girl has kept us strong, she has fought hard to stay here and we will continue to work as hard for her as she has for us. In June 2008 we made the start of our Biggest Journey with Natasha to America to get her life saving treatment for her Epilepsy, we have came home with Natasha Seizure Free but continue to have long road to follow, Natasha will be going back to the US around Springtime for more intense treatment unavailable in the UK, we are pleading with as many people as possible to come forward and help us continue to make Natasha's Journey possible in 2009 . Please enter our fundraising page for more details. |
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| We would like to take this opportunity to Thank all who has supported Natasha on her Journey during 2008, without every one of you this would never have been possible.. We Wish You All A VERY HAPPY '2009' Natalie, Ian & Natasha Falls |