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Help Jack fight Cerebral Palsy

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On the 23rd of January 2016 the world welcomed Twins Jackson and Oliver 15 weeks earlier than their May due date.  It was complicated from the beginning due to the twins having TAPS and Twin to Twin Syndrome. Jackson weighed 752 grams and Oliver an even tinier 496 grams.  

Jackson at 3 hours old 

 3 days into Oliver's short life it was decided that he be removed from all life support due to the fact he was struggling on full support and sadly we lost him very soon after that. 

Jackson put up a huge fight for the first 132 days of life in NICU. We had a lot of touch and go moments and the memories scare me to this day. Fast forward to today and Jack is such a cheeky little man who draws everyone in with his big blue eyes, contagious smile and massive personality.


Little did we know coming home after 132 days in intensive care was only the beginning of the fight. As as a result of his prematurity and the many times his body didn't have enough oxygen during his fight Jackson now has Quadriplegic Dystonic Cerebral Palsy and a hearing impairment called ANSD.  Just the ability to crawl, sit,stand, walk and talk, feed himself  would be a fight to achieve.  Jack experiences fluctuating tone in his body and can go from floppy and unable to hold his head up to completely stiff and experiencing painful muscle spasms in seconds.  

Doctors initially diagnosed Jackson assevere - whether he would even be able to hold his head up let alone sit or crawl was a big question mark, we were told not to expect walking or standing. BUT......these drs didn't know the determination our little boy has.....at a recent review at the CP clinic they now said his prognosis could actually be moderate, MAYBE he will  sit MAYBE he will crawl, perhaps he will even walk short distances with a walker.....
well.....just weeks after that Jack walked in his walker, he began to be able to sit, he has gained some functional use from his arms, he's kicking his legs....he is holding all his weight while standing, he is shocking  all of the professionals each visit with his achievements. 

My goal is purely maximising quality of life and happiness for Jack.  To give him as much independence and opportunities to thrive as possible is so important to me.

 In a little as a month we will have no funding left until the ndis arrives next year, just because the funding stops doesn't mean the therapy can. This year we have huge goals,
- to gain enough arm function for jack to be able to power a wheelchair,
- to purchase a wheelchair accessible vehicle
- to book an intensive therapy called NAPA in Sydney.

Thanks to the amazing support we have had so far we have managed to do the following 
- purchase - gravity chair 
                          - standing frame 
                          - switch adapt toys 
                           - therapy mats
                            - therapy wedge 
                             - OT equipment 
                             - walker 
                             - hydrotherapy spa 

                               - Bath chair


Thank you for taking the time to read our story.  We appreciate all your support.

If you'd like to support Jack even donating the cost of your next cup of coffee will make a difference! We would be so greatful if you could helpus achieve our huge ambitious goals. Jack has sonmuch to offer this world and we can't  let ridiculous price tags stop us in our paths to helping him.  We will explore every avenue while ofcourse maintaining a balance and make sure just being a kid comes first.

If you would like to contribute to Jackson's journey any donation or share of this campaign is incredibly appreciated by us and our little man. Xo

You can follow our journey at www.facebook.com/teamjackson16 




Jack in his new Gravity chair. THANK YOU x 




Organizer

Kristy Lea Hislop
Organizer
Diamond Valley QLD

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