At 15 months old our little girl cannot talk, roll, crawl or even use her hands. She has trouble controlling her own head. Natasha is fed via a feeding tube and has reoccurring chest problems, but our biggest concern for Natasha is that she suffers from severe/complex Epilepsy causing numerous seizures daily. Natasha has been diagnosed with 18q- but is only 1 of 4 children worldwide to have the Mosaic form of this Rare Chromosome Disorder. Without intensive treatment available in Children's Memorial Hospital in Chicago she may never take her first steps, we need help to continue treatment, due to the amount of seizures she has daily her development has been severely delayed. Her most recent EEG on 24th April 08 showed a dramatic change for the worse, meaning this is increasing the risk of damage to her brain. Then at the end of May we faced every parents worse nightmare, Natasha took a turn for the worse, she never woke for 4 days and another EEG had shown her brain fell very sick. We had to make the toughest decision of our life, should we take Natasha onto Chicago without all the funds raised, only enough to cover flights and the initial assessment, we took that decision on the basis that fundraising continued back home, which thankfully my family, friends and others that have came on board are continuing, without them and everyone who has donated so far this would not have been possible. We are determined that if we curb Natasha's seizures her development will improve and she will have a better quality of life. We need to raise £150,000 to cover the costs of taking Natasha to Chicago for Special Treatment. Dr Nordli here has advanced diagnostic equipment required such as 3T and MEGS scans. The chances of a cause being found is hugely increased and through the appropriate intervention Natasha will be treated by either Diet, Surgery and medication but will also need to attend an intensive Therapy Programme around 10 times per week to help encourage development and speech. Dr Nordli is a top epiologist and offers good hope of a breakthrough. Once Natasha's Epilepsy is controlled we have every faith that some day she will walk, talk and even have some independence of her own. By having this treatment it will opening doors to possibilities Natasha wouldn't have otherwise. So Can you Please, Please help us give our little girl this opportunity, we desperately need help to cover the costs of her treatment in Chicago to give her the best chance at life. £150,000 needed sounds like a lot, but with the entire community's help it is achievable. If Natasha is willing to continue putting up a fight, all we can ask for is you all to believe in her. If you wish to Donate please click onto the Donate button above.... Many Thanks Natalie, Ian & Natasha In the mean time we would like to take this opportunity to Thank The Newtownards Chronicle, Prison Staff and Prisoners over Northern Ireland and The Portrush Fire Service for all their input into our fundraising campaign. We would also like to Thank everyone who has already donated to Natasha's Journey of Hope Fund, also to all our family, friends and everyone else who has came on board to help with the fundraising events. |
| 10th March 2007 |
| Natasha's Journey of Hope |
Fundraising:
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