Jack has spent his whole life in and out of hospital having surgeries and treatment for a rare terminal illness called Hunter Syndrome.
Jacks dream since he was little was to go to America and go to Disneyland.
Please help us fulfil Jacks Dream next year before it's too late.
Just like any other mother, Kirsty Taylor has all the hopes and dreams of a happy family and watching her child grow and experience all the things that make life wonderful and happy.
But when Jack is born with Hunter Syndrome, an extremely rare and terminal illness, and told by the doctors to take him home and make everyday as happy as possible for him because they didn’t know how long he was going to live for.
Finding out that there was a treatment available in other countries around the world, she knew that if she could just get her son the treatment that he required and deserved, that he COULD have a chance at a happy and better quality of life than what he was otherwise facing.
To date Jack Jack has endured numerous ear, nose and throat surgeries, 2 carpel tunnel surgeries on both hands, 2 port insertion surges so that he can receive weekly treatment, an open heart surgery, hip surgery, minor neuro surgery twice to determine the level of inter cranial pressure he has and now up and coming neuro surgery to insert a shunt in December. He has been in heart failure twice after two of his surgeries, been close to bleeding out, resulting in emergency blood transfusion. He has had too many MRIs and Cat Scans to count.
He deals with constant bone/ joint pain disabilities with short limbs and currently dealing with possible spinel cord compression and therefore is in and out of a wheelchair often. He is partially deaf and has the intelligence and super power labels of ADHD, ADD, ODD, learning disabilities………………..and the list goes on.
All of these treatments require travelling to Starship Childrens hospital which takes him away from home and along side that Jack is in the local hospital every Wednesday receiving the high cost treatment called Enzyme Therapy Replacement (ERT for short).
When Jack was 6 yrs old, very ill and going down hill fast, after a two year battle with the government drug department of Pharmac, we finally managed to get him the treatment he needed. This treatment is infused into his port-a-cath on a weekly basis (which has gained infections in so that requires a week in hospital to clear), for the rest of his life. It has kept him with us for longer (but not long), and given him better quality of life with more ease.
We require help in fundraising to make this trip happen which includes covering the costs of hospital treatment in the event that Jacks ends up getting sick while away as we are not able to get Travel Insurance cover for him.