Mya Jackson has 30 tumours in her brain and spine. The 10-year-old Holy Cross Catholic School student was diagnosed with NF2 (Neurofibromatosis). The disorder affects one in 30,000 people and causes tumours to grow in the nervous system. Complications include blindness and deafness.
Mya’s step-dad Craig Gerlach says there are good days and bad days. He says there is very little research or treatments available in Canada.
The family has to travel to Montreal for most of Mya’s medical appointments. Her mom, Tanya Lamarche, says Mya had a brain tumour removed at the age of six. She says the tumours grow back more aggressively and are very difficult to remove.   Â
NF1 is more common than type 2 and impacts one in 3,000 people.
Gerlach says even when doctors get going on NF1, NF2 will still be 10 years behind.
The family is hoping to raise awareness about NF2. For more details about the disorder, click here. To follow Mya’s story, check out the Mission for Mya Facebook page.