Tama's Intensive Neurosuit Therapy

When Tama Jai was born we noticed he didn’t move around like our other babies had. He was struggling to breathe so he was given oxygen and taken to Waikato Hospital. He remained on fulltime oxygen at home for the first year of his life because he wasn’t able to breathe deeply enough on his own.

Tama was a ‘floppy baby,’ unable to hold his head up and didn’t cry much. We went up to Starship and did all the tests possible. Doctors described his floppiness as ‘hypotonia’ but could not tell us why his muscles weren’t working properly. They discovered he was swallowing into his lungs because he could not coordinate is muscles to swallow properly, so he had nasal gastric tube inserted, and then an operation to get a mic-key button, which feeds him liquids directly to his stomach.

Tama is almost 3 years old, he is such a happy, placid and lovable boy, with the cutest, hearty giggle. He has made great progress. He is almost off the oxygen at nights and can now eat pureed food, only needing the mic-key button for fluids. He can roll from his back to his front, can hold himself steady if you sit him up, can hold his weight if you support him standing, and in a special walker he is trying to take small steps!

These are huge achievements for Tama and we are so proud of progress he has made because we see how hard it is for him to move and how hard he tries. They say for children with hypotonia or very low tone their muscles constantly feel like they have just run a marathon, each movement can be a struggle. He is not yet able to talk, but can tell us so much with his eyes and expressions.

After all the tests, doctors still don’t know why Tama has hypotonia and whether he will be able to one day talk or walk independently. They say that the next two years are crucial in his development, so we are doing all we can to try and help him.

His Nanny Lin and Mum Kirsty tag team to take Tama to Conductive Education Therapy in Wellington (a 5-6 hour drive) each week during the school terms; where he does all-day therapy and where we have seen him take his first steps tentative in a walker. His Nanny Rina, Aunties and cousins take good care of his brothers and sister while Tama is away. He has the best brothers, sister and cousins who love and care for him and are so understanding when we have to be away from them for lots of days.

We have found a therapy in LA, that is not available in NZ, that we hope will significantly help his progress. The Napa Center (www.napacenter.org) offers a 3 week Intensive Neurosuit Therapy programme to help Tama walk that costs NZ$8,500.00 plus travel is our target of $10,000. Any extra funds will help pay for 3 weeks accommodation and car hireage for Tama. We are also taking his 11 year old and 5 year old brothers and 8 year old sister over to help support their little brother. This therapy will be exhausting and he will need all the encouragement, love and support he can get. Thank you to all those who took time to read this page and those that were able to contribute to helping Tama in his journey to walk. So very much appreciated xx