New Wheels for Jack
Donation protected
Jack! Our little man striving against all the odds stacked against him.
I would like to say that I am and all my/our family are proud to call him one of our own, we are proud of his Mum my “Little Sister” Kirrilee and his big Brother Angus. Kirrilee is a Single Mum doing the best she can for both of her boy’s, keeping a roof over their heads on her own, putting food on the table and trying to give them both a happy and exciting childhood.
We welcomed Jack into our world in 2008, he was a beautiful 12th and final addition to our Grandie Family! All was well, as with all little babes in our world he ate, he slept and he well….you get it! At some 5 weeks old (give or take) becoming unsettled and irritable a very observant GP said “I don’t like how he is holding his head” and sent him to PMH to be assessed. At 7 weeks old, an ultrasound showed anomalies and he was sent for more extensive scans and investigations.
Jack was eventually diagnosed with an Intradural Spinal Lipoma – a fatty Non-Malignant Tumor that was enclosed within his Spinal Column, he had a Brain Stem shaped like an “S Bend” instead of a
Tear Drop! Jacks Tumor is extensive extending from his Brain Stem to L4 resulting in an incomplete tetraplegia with motor level at T1. Within a very short time Jack’s Tumor was compromising his Respiratory System and he was showing signs of Sleep Apnoea (having episodes of not breathing), without surgery at three and a half months old Jack had little hope of survival. Over time Jack has developed severe progressive kyphoscoliosis.
Some 11 Years later Jack requires full time care (both at home and school). He requires full assistance with his daily cares, he has never walked, is wheelchair bound and as such Kirrilee carries him from A to B to meet all his daily needs.
Jack now has some sort of comprehension of his Mortality, he gets frustrated with his situation, he gets frustrated with his legs that don’t work he would just love to be able to walk. This being another thing Kirrilee has to deal with helping him through a grieving process - it just breaks all of our hearts.
We have all recently been informed that there is no longer anything that Doctors can do Surgically to prolong Jack’s life or to stop the deterioration of his Neurological issues. “I’m sorry” are the words
that have been spoken by an amazing team of Doctors that have been supporting him over the years. Jack has had limited sensation and movement in his legs for some time and is now losing more and more of the sensation and movement in his hands. His main joy and fun in life
is his Nintendo Switch and Xbox games…not to mention going to movies!
At the moment all we can do is support what he has to prevent deterioration of his current status. Some time back Kirrilee was given the privilege of a vehicle to move Jack around in (with of course a
chair lift). After having to upgrade Jack’s wheelchair due to the nature of his growing this vehicle soon became “Not Fit for Purpose” as it was no longer to code! Aside from that it was not the easiest of vehicles to work in when securing Jack’s chair leaving Kirrilee open to hurting herself – she has hurt herself in the past just carrying or moving Jack. Without her health Jack is left somewhat stranded.
Unexpectedly we now have the opportunity of purchasing a vehicle that would alleviate a lot of the pressure when it comes to moving Jack around. She would be able to move around his chair freely and stand
upright without twisting, reaching and contorting herself around the chair.
We just want to be able to support Kirrilee’s little family which in the long run would see her being able to do more with her boy’s, take them place’s and have more “Fun” for the sake of Jack. No one can say how long our Little Man will be with us but we would like to be able to say that he was here for a good time - regardless of how long his time is with us!
Please help us support her Family by giving what you can to help her with the purchase of a vehicle that would see her being safe in her care of not just Jack but both of her boy’s, because should she hurt herself ultimately both of them would be left without a responsibly fit carer.
I would like to say that I am and all my/our family are proud to call him one of our own, we are proud of his Mum my “Little Sister” Kirrilee and his big Brother Angus. Kirrilee is a Single Mum doing the best she can for both of her boy’s, keeping a roof over their heads on her own, putting food on the table and trying to give them both a happy and exciting childhood.
We welcomed Jack into our world in 2008, he was a beautiful 12th and final addition to our Grandie Family! All was well, as with all little babes in our world he ate, he slept and he well….you get it! At some 5 weeks old (give or take) becoming unsettled and irritable a very observant GP said “I don’t like how he is holding his head” and sent him to PMH to be assessed. At 7 weeks old, an ultrasound showed anomalies and he was sent for more extensive scans and investigations.
Jack was eventually diagnosed with an Intradural Spinal Lipoma – a fatty Non-Malignant Tumor that was enclosed within his Spinal Column, he had a Brain Stem shaped like an “S Bend” instead of a
Tear Drop! Jacks Tumor is extensive extending from his Brain Stem to L4 resulting in an incomplete tetraplegia with motor level at T1. Within a very short time Jack’s Tumor was compromising his Respiratory System and he was showing signs of Sleep Apnoea (having episodes of not breathing), without surgery at three and a half months old Jack had little hope of survival. Over time Jack has developed severe progressive kyphoscoliosis.
Some 11 Years later Jack requires full time care (both at home and school). He requires full assistance with his daily cares, he has never walked, is wheelchair bound and as such Kirrilee carries him from A to B to meet all his daily needs.
Jack now has some sort of comprehension of his Mortality, he gets frustrated with his situation, he gets frustrated with his legs that don’t work he would just love to be able to walk. This being another thing Kirrilee has to deal with helping him through a grieving process - it just breaks all of our hearts.
We have all recently been informed that there is no longer anything that Doctors can do Surgically to prolong Jack’s life or to stop the deterioration of his Neurological issues. “I’m sorry” are the words
that have been spoken by an amazing team of Doctors that have been supporting him over the years. Jack has had limited sensation and movement in his legs for some time and is now losing more and more of the sensation and movement in his hands. His main joy and fun in life
is his Nintendo Switch and Xbox games…not to mention going to movies!
At the moment all we can do is support what he has to prevent deterioration of his current status. Some time back Kirrilee was given the privilege of a vehicle to move Jack around in (with of course a
chair lift). After having to upgrade Jack’s wheelchair due to the nature of his growing this vehicle soon became “Not Fit for Purpose” as it was no longer to code! Aside from that it was not the easiest of vehicles to work in when securing Jack’s chair leaving Kirrilee open to hurting herself – she has hurt herself in the past just carrying or moving Jack. Without her health Jack is left somewhat stranded.
Unexpectedly we now have the opportunity of purchasing a vehicle that would alleviate a lot of the pressure when it comes to moving Jack around. She would be able to move around his chair freely and stand
upright without twisting, reaching and contorting herself around the chair.
We just want to be able to support Kirrilee’s little family which in the long run would see her being able to do more with her boy’s, take them place’s and have more “Fun” for the sake of Jack. No one can say how long our Little Man will be with us but we would like to be able to say that he was here for a good time - regardless of how long his time is with us!
Please help us support her Family by giving what you can to help her with the purchase of a vehicle that would see her being safe in her care of not just Jack but both of her boy’s, because should she hurt herself ultimately both of them would be left without a responsibly fit carer.