We had never heard the word Neurofibromatosis or cafe-au-lait, but a simple question to Mykaela’s paediatrician about the article lead to specialist referrals, and a tentative diagnosis at 18 months of age. We were advised against genetic testing (not reliable at that time).
Early childhood meant countless cafe-au-laits (one the size of a toast plate), a larger than average head, balance and coordination issues, plus mild sensory issues for Mykaela.
There were regular medical checks and scans to track development (some where we were educating the doctors on NF). Otherwise Mykaela was a bright, healthy, happy child.
At 5 years of age Mykaela finally received a definite diagnosis of a spontaneous mutation of NF1 when lisch nodules were confirmed and a plexiform fibroma was discovered on her scalp.
Then came school! Social confusion and struggles; teachers berating her for fine and gross motor control issues despite being provided with information on NF; teasing from peers due to the cafe-au-laits, neurofibromas, and “klutziness”; increased pain from hundreds of neurofibromas developing throughout her body; migraines; discovery of a mild scoliosis; always working twice as long as her peers to learn the same knowledge and skills.
We thought it was clever when Mykaela taught herself to lip read teachers... until we realized she cannot hear effectively when there is background noise.
Constantly navigating all this lead to mental health issues for Mykaela.
To NF1, she slowly added diagnoses of Auditory Processing Disorder, Autism Spectrum Disorder, Attention Deficit Disorder, Anxiety and Depression - now all recognized at higher incidence for children with NF1.
Mykaela’s latest scans have shown that the plexiform fibroma on her scalp is changing and she is now facing her first major surgery to remove the fibroma.
It has been 13 long years of school, but our amazing Fighter is currently studying Year 12.
She is a gentle, caring, mature, resilient young woman with a unique view on life from all she has fought through.
She loves to cook and read. She plays on her school netball team, in a netball dress, with some of her cafe au laits and neurofibromas on display. After graduation Mykaela hopes to study nursing and work as a Pediatric Nurse.
On Mykaela’s journey she has worked with so many people. An excellent paediatrician who knew exactly what those first cafe au laits were, a supportive GP, the wonderful NF Clinic at RCH Melbourne, the Murdoch Children’s Research Institute on several NF trials, an ophthalmologist, neurologist, psychologist, psychiatrist, audiologists, physiotherapists, podiatrists, chiropractors, speech pathologists, tutors.
We have attended CTF camp and used CTF information pamphlets to educate her teachers.
I know they say it takes a community to raise a child, but never is that truer than when that child has NF!"
Now, as Mykaela takes her first steps toward adult treatment, she is learning to speak out about NF, sharing her journey and knowledge with others.
Mykaela wowed her teacher and class with a great oral presentation on NF1 during a science unit, and ended by stating “oh, and by the way, I have this condition!”
Mykaela is considered a moderate NF1 case and has been lucky not to have fought some of the most severe complications of NF but we KNOW A FIGHTER... and we are so proud of everything she has achieved!