Thirteen-year-old Christian Lingenberger has neurofibromatosis, and she and her family are struggling to cope with the illness.
Neurofibromatosis, the more common type is known as NF1, is a rare genetic disorder that affects one in 3,500 babies.
In more serious and rare cases, like Christian's, it causes tumours on the central nervous system, which can cause serious complications.
Christian has at least six tumours in her brain, and her mother estimates there are at least 100 overall.
Birgit Lingenberg says "It' not fair to her and she didn't ask for it, but it's there so we have to deal with it."
There is no cure, but there is hope that tumour growth will slow over time. There are also a lot of doctor's appointments to contend with and concerns that benign tumours could become cancerous.
Most children with NF1 also have trouble at school. Christian suffers from ADHD and autism.
She says "It's hard, like for gym and all kinds of other things, like all my behavious out off the way from this."
Pediatrician Dr. Bruno Digravio says children with mild cases can have no problems. But in more rare cases tumours can affect bones, sight, hearing and in the most serious cases, the brain.
"If a tumour develops there it can cause seizures, and cause headaches and major loss of neurological function."
While Christian says her tumours don't cause pain, she and her mom hope they will stop growing.
What they do want to grow is public awareness of the disorder. A walkathon and fundraiser are planned for Sept. 17 in Kitchener.
For more information on neurofibromatosis please visit: http://www.nfon.ca/
