She had a unique progressive, degenerative nervous system disorder.
The only one of it's kind in the world. No known treatment or cure.
A huge effort has been put into investigating the cause of her condition and we're encouraging everyone to make donations to help fund the ongoing research. The work being done has major ramifications for other Canadian families living with SMA-PME.
Our daughter India with her dog 'Finn'. This picture was taken when she was nine, one year before the onset of the seizures which took over her life. At the time of her death she was having around 4,000 a day; one every five or six seconds.
PLEASE NOTE: We have no fancy automatic way to update this total
but we will attempt to provide updates on a weekly basis.
Our daughter is one strong girl –we will think of her this way for the rest of our lives– but even she could not hold out against this cruel disease. Further research is needed. Every dollar counts and no donation is too small. Please help us fund research.