Help Kellee and Tye go through this journey

Hi my name is Deanne, I am a friend of Kellee and Tye, sadly Tye a 14 year old boy has just been diagnosed with an array of medical problems. I will update you on Tyes journey as I get the information. Kellee is a single mum and will need any help they can get as she will need to take time off work for Tyes appointments in Brisbane. Tye is a sport loving boy who's life as we know changed. He has a battled with problems for a couple of years now and today they discovered a tumour in his brain (Craniopharyngioma) this is a very rare condition. It has already caused him damage to his sight. Still yet to see the specialist in Brisbane. Tye is one tough kid. Any help no matter how small or large it all helps. Thank you.

This diagnosis definitely blindsided us and never for a moment did I think we would be walking this path.Tye started having health issues after the age of 11. He was always a head above everyone growing up...such a giant. At age 11 he slowed and everyone over took him. We just assumed he'd get his puberty growth and catch back up. Only puberty never came and so many health issues began to arise. I spent thousand and thousands of dollars and took him to so many different health specialist trying to figure out what was wrong with my boy. Thinking we were going crazy, having people tell us it was all in our heads, taking our money and not giving a shit, dismissing us and turning us away, telling us they didn't have the time. It was frustrating, it was upsetting and it was bloody hard to keep showing up. But I knew something wasn't right with my boy....so I kept on pushing. Gps, paediatricians, physios, podiatrists, muscle therapists, neurosurgeons the list goes on and on...until spinal surgery last year. We thought it was going to be the answer to everything. It wasn't. So I kept on telling them something's just not right. A mama bear knows. I'm glad I listened to my gut and kept on fighting to be heard. Because my son infact had a brain tumour. My child will never be the same again.

Tye'rone has 45% vision left in his right eye and 53% in his left (still needing to be reassesed after surgery for any further loss), he has multiple on going medical issues caused by this chronic rare disease that will affect his quality of life. Tye'rone's life span will be drastically shortened because of all the ongoing health issues. For now we push back radiation for as long as possible and just wait and watch for regrowth from the residual. This isn't just a brain tumour with a high reoccurance rate, it is a rare chronic disease that wreaks havoc and causes so much permanent damage to so many functions of your body. A cough, a vomit, a cut can cause Tye'rone to become extremely ill. He is at high risk of adrenal crisis. He will never have the same energy he did before. He takes large amounts of medications for the rest of his life and will soon begin various hormone treatments on top of all of it. He will also need help to start puberty and having children could very much have been taken away from him. Most of this caused by the tumour itself, some of it caused by the surgery. We were initially told it couldn't be removed as it was calcified and stuck to so many important parts but regardless mid surgery they chose to rip it out. This caused acute brain injury to the frontal lobe of his brain.

#craniopharyngioma #braintumour #fightthefight #itsnotover #itwillneverbeover #chronicdisease #raredisease #secondaryhealthissues #somanyofthem #forevernowhislife