Kyson’s father had NF1, so I always knew it was going to be a 50/50 chance of Kyson also having it. When he was born, he looked no different to any other baby at the hospital. He was perfect. Soft skin, lots of dark hair and had a perfect little button nose.
As the weeks went by and he started to grow, I noticed that his legs were very bowed in. I took him to my GP who sent off a referral to the paediatric clinic. Within two weeks we had our first appointment and she immediately sent us to an orthopaedic surgeon.
Kyson had X-rays and regular follow ups, but we were told there was nothing to be too concerned about.
On our next visit to the paediatrician, we went through Kyson’s medical history in more detail and I alerted her to the family history of Neurofibromatosis. She took it very seriously and sent us to see a geneticist. In the time it took to secure an appointment (which actually was not that long), Kyson had started to get freckling in his groin and under his arms. A number of café-au-lait spots also started to appear all over his back and arms, with a few on his belly.
I knew in that moment that my precious 6-month-old boy had inherited Neurofibromatosis.
The geneticist confirmed he had NF1 on the spot. Even though I knew the diagnosis was coming, hearing those words out loud hit me pretty hard. In the same moment, I knew I had to be strong for my little boy and be his advocate at home, school and the hospital.
We have had had regular check-ups with our paediatrician for the past few years to monitor his condition, but this has largely been about keeping tabs on his weight, height and blood pressure. Our first MRI was scheduled for earlier this year in response to the regular migraines Kyson was experiencing. The found numerous bright spots (or UBOs) on his brain, but nothing to be overly concerned about at this stage.
He has yearly check-ups with the orthopaedic surgeon for his legs, but these have been relatively straight forward, with no major problems to be concerned about right now.
Whilst his physical health has been reasonably good, there are a number of behavioural problems that have been a bit more challenging. Kyson has been diagnosed with Oppositional Defiance Disorder (ODD), Attention Deficit Hyperactivity Disorder (ADHD) and Conduct Disorder.
A combination that means regular appointments with a psychologist, behavioural specialist, dietician, and a speech therapist.
Accessing government support through NDIS is absolute minefield, but after reaching out to the Children’s Tumour Foundation, this process became so much simpler and quicker.
Ruth has been an absolute god send! Without her support, guidance and knowledge we would not have been accepted for NDIS. This would have meant waiting two precious years to see most specialists. I cannot thank her enough for everything she has done. You can tell she loves her job and truly cares about her clients.
He started kindergarten this year and thoroughly enjoys himself. He plays soccer on the weekends and goes for Sydney FC, the same as his Dad.
He is a very outgoing, clever little boy and I couldn’t be any prouder of him.
I don’t know what the future holds, but I do know that I’ll continue to help find a cure and raise funds to spread the word about Neurofibromatosis.