Str8up Gear

We started this venture to bring awareness to children’s cancer and to create a supportive community to help and support families going through the same thing. We know the struggles and hardship this can bring to your family. 4 years ago this was us and our little boy Tama’s story: On the 15 December 2018 at the age of 7 months little Tamati was diagnosed with brain cancer, which is called Desmo plastic Infantile ganglioma Astrocytoma. We called the Ryan’s rule. Calling the Ryan’s rule over rides the doctors and they have to do every test until they have an outcome. If we did not call the Ryan’s rule Tamati would of passed away within 8 hours. On the 16th December Tamati was rushed for emergency surgery to release the fluid on his brain, they drained 500ml. On the 18th of December Tamati had major brain surgery to remove/debulk his tumour. Unfortunately they could only remove 80 percent of his tumour. When Tamati woke from surgery His right side was paralysed and he suffered loss of eye sight. 2 days after surgery Tamati also suffered a severe stroke. Tamati spent 3 weeks in icu and 3 months in hospital recovering. Tamati had his very first Christmas in hospital. 6 months later, the doctors discovered his brain tumour had started to grow back. Tamati started chemo therapy treatment for the following 12 months including an MRI every 3rd month. We have been told the treatment will slow down the tumours growth. Tamati now undergoes intensive therapies 5 days a week including occupational therapy to help restore his movement on his right side. He also requires speech therapy to help with his talking and conversational skills. With all this, plus physio we are hopeful he will be up and running around like other children soon. There is no cure for Tamati as his tumour is wrapped around his pituitary gland. This was definitely a hard pill to swallow. Surgery is not an option for now, If Tamati was to have surgery it would result in complete lose of all mov