We’d love you to meet Kobe, a super-sporty kiwi kid who enjoys nothing better than riding his bike, running and playing too many team sports to count one hand! Kobe had a dramatic start to life and is tackling huge challenges with courage, determination and the support of his wonderful family. Every year Kobe travels from their farm in Taranaki for a week of appointments and treatment at Wellington Regional Children’s Hospital. To help us help kiwi kids like Kobe from around our region who need ongoing care and treatment at your New Regional Children’s Hospital, please donate HERE.
Hi, my name is Kobe, I’m 10 years old and I live in rural Taranaki on a farm with my Mum, Dad and little sister Emma. I arrived into my family’s world in a hurry at Wellington Hospital at 36 weeks. I was rushed straight to theatre when I was born where I had to have a tracheostomy put in to help me breathe. My Mum and Dad then found out three hours later that I had been born with Treacher Collins Syndrome. I spent the first 4 months of my little life in the Wellington Hospital NICU before I headed home to start my life journey with my family at home in Taranaki.
Treacher Collins Syndrome is a rare genetic syndrome that effects 1 in 50,000 babies born here in New Zealand. It caused my jaw and cheek bone area to be underdeveloped which has resulted in a lot of my craniofacial area to have not formed properly. Treacher Collins Syndrome has caused me to have hearing, breathing, and eating problems. I wear two BAHA one for either side of his head. A BAHA is a hearing aid that works through bone conduction; it picks up the vibration of sound and sends it to my cochlea to help me hear. These are fitted to a band which sits on my head. I can’t eat normally like other kids through my mouth, so I am fed through a gastrostomy that is a little tube into my tummy. Because my jaw is underdeveloped and parts did not form at all to keep my airway open, I can’t breathe normally so I have a tube in my neck called a tracheotomy to help me breathe.
In my 10 years of life I have had 10 big big surgeries at Wellington Hospital to help with my breathing, to support my face, and to help me to be fed and see better. I come back to Wellington for a week of appointments each year (My Warrant of Fitness). I go to theatre to have my airway checked by my amazing ENT surgeon Dr Katherine Bagley, have my teeth checked and any work done by the dentists in theatre. I catch up with my good friend Claire the ENT nurse, have a visit with my Speech Language Therapist Bryony Forde and have my yearly check up with the man who is responsible for all of the amazing craniofacial surgeries I have had done since I have been a baby – Mr Charles Davis. I am so lucky to have the most terrific team of people looking after me on my medical journey with the knowledge and skills to help me to live and develop in life.
I have had 19 anaesthetics, 17 visits to theatre and lots and lots of medical procedures done over the last 10 years. I don’t like going to hospital or going to theatre but I’m brave – I have my family with me, my fantastic friends I get to see when I’m here, and all the great people at Wellington Hospital who look after me when I’m in for simple procedures, day ward stays, ward stays, big operations from my doctors, anaesthetists, recovery room nurses, paediatricians, surgeons right down to the cool orderlies!
I am a sporty kid that loves to ride my mountain bike and BMX bike, to play cricket, tennis, golf, soccer, hockey, basketball and have fun with my friends and other kids – I’ve even done a Weetbix Tryathlon in New Plymouth last year where Para Olympian Rachel Maia handed out our medals.
I know I have many more challenges ahead in my future with having severe TCS and there will be more operations that will follow as I get older, but right now I am loving being a 10 year old on my adventure of life.