Small but Mighty Zoe, Hospital Fund
Donation protected
This is Zoe. 2 days after her second birthday, she was diagnosed with Spinal Muscle Atrophy (SMA), a rare genetic neuromuscular disease which progressively causes muscular weakness and loss of movement due to muscle wasting. Eventually if left untreated, it takes away the ability to walk, move arms, hands, head and neck, and eventually, the ability to swallow or breathe independently.
If you'd like to learn a little bit more about her, here is her short news piece: https://bit.ly/2Ho3IyQ
Thankfully, we were able to become the first family in British Columbia to get approval for private insurance coverage for the only treatment available for SMA. Zoe started her treatments about 3 weeks ago. The medicine is delivered by removing 5mL of cerebrospinal fluid from her body and injecting 5 mL of Spinraza. It can currently only be done in the Special Procedures Operating Room at BC Children's Hospital in Vancouver. Since we live in Victoria, we are required to travel for appointments quite frequently.
We know there will be big expenses in the coming years including things like adaptive vehicles, walking aides, specialized therapies, etc. which we are trying to plan for now, but at the moment we are just trying to get through Loading Dose phase (4 doses within the first 60 days). It has been exhausting so far, but we have faith that this too shall pass!
We are hoping to raise $5000 to help with this first year+ while the travel to Vancouver from Victoria for treatment are the most hectic and concentrated. This will help pay for:
7 visits to BC Children's Hospital, 6 for Spinraza administration + 1 for check up ($300/ea)
- Ferry ticket for 1 parent (the other parents is covered by the BC TAP program, hyperlinked for those of you who might need to access them one day), hospital parking, food while on the road, gas.
SMA Camp, an adaptive camp for families in Canada with children with SMA. We are hoping to connect with others who have experience with raising an SMA child ($700)
- Registration, ferry, gas, accommodation
Additional Expenses/Unknowns which we know are likely to occur throughout treatment and especially as we get past Year 1
We are very grateful that our hotel for hospital visits are covered by the BC Family Residence Program (hyperlinked for those of you who might need to access them one day).
I'll post updates here, or for even more details about how her treatment is going, visit www.facebook.com/smallbutmightyzoe
Thank you for even considering helping my family through a donation! We appreciate all of the love and kindness, and promise to pay it forward to others in need when we can. <3 <3 <3
Love,
Vivienne, Tensley and Small but Mighty Zoe
If you'd like to learn a little bit more about her, here is her short news piece: https://bit.ly/2Ho3IyQ
Thankfully, we were able to become the first family in British Columbia to get approval for private insurance coverage for the only treatment available for SMA. Zoe started her treatments about 3 weeks ago. The medicine is delivered by removing 5mL of cerebrospinal fluid from her body and injecting 5 mL of Spinraza. It can currently only be done in the Special Procedures Operating Room at BC Children's Hospital in Vancouver. Since we live in Victoria, we are required to travel for appointments quite frequently.
We know there will be big expenses in the coming years including things like adaptive vehicles, walking aides, specialized therapies, etc. which we are trying to plan for now, but at the moment we are just trying to get through Loading Dose phase (4 doses within the first 60 days). It has been exhausting so far, but we have faith that this too shall pass!
We are hoping to raise $5000 to help with this first year+ while the travel to Vancouver from Victoria for treatment are the most hectic and concentrated. This will help pay for:
7 visits to BC Children's Hospital, 6 for Spinraza administration + 1 for check up ($300/ea)
- Ferry ticket for 1 parent (the other parents is covered by the BC TAP program, hyperlinked for those of you who might need to access them one day), hospital parking, food while on the road, gas.
SMA Camp, an adaptive camp for families in Canada with children with SMA. We are hoping to connect with others who have experience with raising an SMA child ($700)
- Registration, ferry, gas, accommodation
Additional Expenses/Unknowns which we know are likely to occur throughout treatment and especially as we get past Year 1
We are very grateful that our hotel for hospital visits are covered by the BC Family Residence Program (hyperlinked for those of you who might need to access them one day).
I'll post updates here, or for even more details about how her treatment is going, visit www.facebook.com/smallbutmightyzoe
Thank you for even considering helping my family through a donation! We appreciate all of the love and kindness, and promise to pay it forward to others in need when we can. <3 <3 <3
Love,
Vivienne, Tensley and Small but Mighty Zoe
Organizer
Vivienne Damatan
Organizer
Victoria, BC
