Kody Tobler has a condition called “short gut”; he has only 27cm of small intestine, no ileocecal valve, inlarged bowels and no movement inside his intestines. He also has a large spleen, a very scared liver and is now in need of a bowel and liver transplant.
Of those with this condition, Kody is now the longest surviving child in Australia and, our doctors tell us, the world.
Kody is our king. He has lived in exile in the hospitals now for n 3 years come January the 27th. He is loved by all in the hospital and has been cared for well there but we have been training our butts off and planning for the big day as we have been told that Kody can come home and live with us as of the 16th of December this year so that we could all be together for the first time live like a real family. We are over the moon and it is a wish come true that we can look after Kody and he can play when ever he wants with his sisters Kyla and Destiny, mum and dad.
Kody has overcome many battles and needs to over come one more; we need to get him a transplant very soon. The hospital has givin us about 6 months so we need all the help we can get to help not just Kody but all the others going though a similar situation. We are now trying to set up a support forum for gastroshisis and short gut children and the parents of these children, so that if they had questions, need someone to talk to in the same situation, talk to doctors, have a shoulder to cry on, etc, we are not alone as there are many of us out there and we should talk together.
We are also trying to get transplants for intestines in N.S.W. It is established in Melbourne, set up and ready to go with one child on the list, they are just waiting for donors. But Melbourne has just closed the borders and will look after Victora kids first, so Kody can’t go down there now. I am frustrated as WE LIVE IN AUSTRALIA and need all our kids fixed. We have had a meeting with the head of the childrens hospital in Sydney and Sydney are now looking into it but for them to set up for transplants it will still take time… 5 to 7 years I’ve been told, but it will happen.
We are also trying to start up a foundation through the hospital for the gastroenterology department to improve the technology for working with the gastro system and work towards providing transplants; the only money they get is what the hospital gives them to do the work, not for new equipment or research.
There are cancer, heart, muscle, M.S, kidney, liver, brain foundations but no gastro foundations out there. So Kody would love to start one for all his freinds and other children like him. Kody loves everyone and is trying to help by helping them. Kody is also the first child in Australia ever to try a liver protection drug called NAC (N-acetyl cysteine).
We were told when Kody was first born that he wouldn’t live 24 to 48 hours so spend as much time with him as you can and we did we cherrish our boy and would do anything for him but were asked if we wanted to turn the machines off atfter birth, we said NO. Then they explaned to us that to keep him alive we have to give him T.P.N. (Total Parental Nutrition) and that the T.P.N. as well as all the other meds he would need would kill his liver so spend all the time you can with him because we don’t know how long he was going to be here…. max 3 to 6 months before liver failure. So when we spoke to our doctor we told him about a drug that his dad had once, and he said he would look into it for us that night, a couple of days later he had spoken to his teacher from over in Toronto Canada via the Internet. He said to our doctor that he had a child dose of NAC and was trialing it on 4 children to see how it go’s and he also said that it didn’t hurt the liver and he was waiting for more results. We then asked if we could use it on Kody. We had to wait a little to get premission and as long as I signed experamental paper work to say I give premission to use the NAC on kody and if anything was to happen I would be liable, so I told them to start straight away.
Kody has lived a lot longer then what was expected and has defined all the odds as he is nearly 3 years old and is great within himself. He is the happest kid I know and funny; he loves a joke. We are now trying to give him the best life he can have for when he comes home. So we are going on a airplane ride, a Harley Davidson ride, a helicoptor ride we are going to try and do everything we can with him although money is tight and he may have to go back to hospital for another operation in January. Kody is going to have a ball the day he comes home as his little sister Destiny’s 1st birthday is the 16th of December also. The make a wish foundation are going to throw Kody a party and give him pressies after he comes home and then Christmas and Santa comes, then his big 3rd birthday. We will have a big party then as the Make a Wish Foundation are going to grant kody his wish… what ever he wants to do they will do for him. They are are wonderful people, Kody will have the best time ever. I know what he wants already – that bloody Ben 10 Warner Brothers Qld he loves him.
We are having BBQs for kody once a month, a $2 sauage sizzle down at Lake Illawarra foreshore next to the entrance of the lake at Warilla beach next to the park and everyone is welcome we have a good day the kids can play at the park, go swimming, play cricket have a chat, meet new people and have a feed and a drink. It’s a good day for the family to get out and relax and Kody has a ball, he runs from one side to the other, all the kids have fun with kody and he loves it so come on down and join, Kody will thank you and if you could help him in some way he would love it and if anyone just wants to talk Kody also has a facebook page called the Kody Tobler Support Page and you are all welcome to join, write to him and he’ll write back or tell us what to say lol. He also has google just type in kody tobler and you’ll go to his newspaper clippings.
Thankyou all the Tobler family….
Tough Tobler - miracle boy 