Sherwood Park sisters Ayva and Halla Ahlefed could see some hope on the horizon with a trial drug.
Ayva, 18, and Halla, 15, were both diagnosed with Labrune Syndrome in elementary school after having multiple seizures.
This extremely rare genetic disease causes progressive degeneration of the brain where a mix of cerebral white matter disease, intracranial calcification, and cysts invade the brain and cause loss of function.
After hearing about a drug initially created to help cancer patients in a Facebook group for families affected by Labrune Syndrome, Lindsey Switzer, the girl's mother, brought it to their medical team's attention.
When administered by IV every two weeks, Avastin is a drug that could slow the growth and presence of cysts on the brain. Although it will not reverse the medical issues the girls currently have, it could stop growth and prolong their lives.
Switzer was very excited when she learned about Avastin, but the drug's price is more than she can currently afford.
The Victory Fund will cover fifty per cent of the drug's $30,000 price tag, but only Halla will get the chance to try the drug before Ayva.
Halla was recently moved into palliative care due to the illness progressing much faster than expected. She no longer can walk or feed herself and needs assistance to be transported from home to the hospital.
With Switzer being the primary at-home caregiver and a single mom, she said this has presented challenges in more ways than ever expected.
"People have good intentions and want to be apart of our lives, but once they are and see what is involved, most of them leave because it is too sad," said Switzer.
"I realized that not everyone is strong enough to love someone for who they are, rather than what they can offer you. It turned into a beautiful lesson for me and my girls."
A GoFundMe page has been set up by Switzers' friend to help raise money for the other half of Avastins price tag.
Both of the girls receive care at the Stollery Children's Hospital in Edmonton.