Our son Seti is almost 3 years old and he has faced several challenges in his short life. When Seti was born 6 weeks prem he suffered a brain injury and haemorrhage that has left a scar on the right side of his brain. He endured multiple surgeries including one at only 7 weeks old to fix 3 hernias and a cleft palate repair at 11 months old. During one of his many general anaesthetics Seti had an MRI which revealed he has severe delayed myelination in his brain. Due to the ongoing complications that Seti’s brain faces during development, he has a global developmental delay and he is not walking, talking or feeding himself like most 3 year olds. Up until 2 weeks ago Seti couldn't even crawl, making his day to day life frustrating as he couldn't explore, learn or keep up with other kids. Seti has been attending physio 1-2 times a week since he was only 5 months old as well as weekly OT, speech/feeding clinics and teacher of the deaf sessions. In June his physio started discussing the need to get him measured up for a wheelchair which was heartbreaking to hear. We thought there has to be a better option out there. We were fortunate enough to have a try of a translingual neurostimulation (TLNS) device. I had read about them many years ago in a book (The Brain That Changes Itself) about neuroplasticity which helped me get my head around how on earth something stimulating the tongue can have an impact on the brain. Seti tried it for a very short amount of time and then went off to an intensive exercise program and is now crawling. The TLNS amplified the effects of the exercise program he was doing so what couldn't be achieved in 2 years ended up being achieved in 2 weeks even though he couldn't use the device to its full potential. It was just lucky timing that he got to try it at all. Like all parents we want to be able to get Seti to walk, run, jump and play. We want him to fulfill his full potential, live his dreams and have the best life possible. NDIS has allowed us to access all the therapy that Seti has needed so far but they won't fund the TLNS device which costs around $8,000 even with the amazing results it gives and that getting him walking with help from the TLNS will be much cheaper in the long run than funding walking frames and wheelchairs. We wholeheartedly believe that the TLNS device used regularly and in conjunction with an intensive exercise program will be the difference between Seti being in a wheelchair, walking with a walking frame or walking independently and possibly even running. The dramatic outcome from the short exposure Seti had plus the videos we have seen from other families showing fantastic results is why we believe this and feel so strongly about purchasing one for Seti. Most families are struggling at the moment due to the crazy increase in cost of living and we don't want to burden anyone. Our hope is to reach out and have Seti’s story shared with many people so that if they can donate a dollar or two we can get closer to purchasing a TLNS and get him up and moving. Thanks Cat and Ash
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