Hayley's Medical Trip & Bucket List
Donation protected
Hayley Rose is a young Vancouverite who was diagnosed with a severe form of Epilepsy called Lennox-Gastaut Syndrome in 1999 (at the age of 6). LGS is a rare disease characterized by multiple types of seizures (8 in total) which she was experiencing constantly, even in her sleep.
Update!
Unfortunately we were not able to do her wish to go to the fusion festival.
We have been able to get approval for an out of country, out of hospital dietitian for the ketogenic diet!
This means we do Not have to travel to Ontario to seek treatment!
The dietitian unfortunately is Not covered under medical insurance and we must raise the funds for the treatment.
Hayley can start the diet on September 1st into a slow introduction into ketosis which takes 2-3 weeks to get to full ketosis.
This is the only opportunity before palliative surgery of vns.
We are down to the last measures in Hayleys treatment. We have 3 more medicines to try and 2 most likely wont work. We have ivig and vns. None of these options is being given high hope and Hayley already fell out of eligibility within 6 weeks of palliative temporal lobe surgery due to speed of decrease in short term memory. We must get this opportunity!
The expenses are ongoing as after the initial 3 month introduction period but at far less than the initial costs.
here is the breakdown in U.S. dollars
3 Month Program includes:
Initial assessment
Ketogenic Diet Instruction:
Meal planning and schedule
Ketodietcalculator training
Scale and meter training
Daily phone/email contact during diet initiation (5-7 days)
Weekly phone call and daily email as needed for weeks 2-4
Weekly-Monthly follow-up calls and 1-2 emails/week for months 2/3
Monthly monitoring for program participants:
After completion of 3-month program
30-60 minute phone follow-up
2 emails per week
Lab review as needed
Fees:
3 Month Ketogenic Diet Initiation: $1550
Monthly Monitoring: $100/month
some of the additional costs for the blood glucose meter , strips and scale should be covered under her medical which i am trying to confirm.
our new total needed is coverted into canadian dollars according to the exchange rate on aug 27,2018 from U.S. dollars and is for 1 full year of treatment.
here is the site to our new dietitian http://www.potterketogenic.diet/
. Help make a difference today, please join us in our battle to save Hayley's life.
We are raising money to fulfill these wishes. Please help us fundraise for Hayley!
Hayley's Bucket List:
*1. To see her brother who is in Ontario. We almost have his entire return ticket covered!!!! Thank you Jackie Cameron !
*2. To make a cd of her singing her favorite songs Ya! Hay has been donated studio time!!!!! Thank you Ian Rolls and friends! !!!!
3. Camping, fishing and swimming
Thank you and please stay tuned for updates!
To find out more about Hayleys story:
Please visit the Hayley Rose Foundation website:
http://hayleyrosefoundation.org/
and Hayley Rose Foundation Facebook page:
https://www.facebook.com/HayleyRoseFoundation/
Update!
Unfortunately we were not able to do her wish to go to the fusion festival.
We have been able to get approval for an out of country, out of hospital dietitian for the ketogenic diet!
This means we do Not have to travel to Ontario to seek treatment!
The dietitian unfortunately is Not covered under medical insurance and we must raise the funds for the treatment.
Hayley can start the diet on September 1st into a slow introduction into ketosis which takes 2-3 weeks to get to full ketosis.
This is the only opportunity before palliative surgery of vns.
We are down to the last measures in Hayleys treatment. We have 3 more medicines to try and 2 most likely wont work. We have ivig and vns. None of these options is being given high hope and Hayley already fell out of eligibility within 6 weeks of palliative temporal lobe surgery due to speed of decrease in short term memory. We must get this opportunity!
The expenses are ongoing as after the initial 3 month introduction period but at far less than the initial costs.
here is the breakdown in U.S. dollars
3 Month Program includes:
Initial assessment
Ketogenic Diet Instruction:
Meal planning and schedule
Ketodietcalculator training
Scale and meter training
Daily phone/email contact during diet initiation (5-7 days)
Weekly phone call and daily email as needed for weeks 2-4
Weekly-Monthly follow-up calls and 1-2 emails/week for months 2/3
Monthly monitoring for program participants:
After completion of 3-month program
30-60 minute phone follow-up
2 emails per week
Lab review as needed
Fees:
3 Month Ketogenic Diet Initiation: $1550
Monthly Monitoring: $100/month
some of the additional costs for the blood glucose meter , strips and scale should be covered under her medical which i am trying to confirm.
our new total needed is coverted into canadian dollars according to the exchange rate on aug 27,2018 from U.S. dollars and is for 1 full year of treatment.
here is the site to our new dietitian http://www.potterketogenic.diet/
. Help make a difference today, please join us in our battle to save Hayley's life.
We are raising money to fulfill these wishes. Please help us fundraise for Hayley!
Hayley's Bucket List:
*1. To see her brother who is in Ontario. We almost have his entire return ticket covered!!!! Thank you Jackie Cameron !
*2. To make a cd of her singing her favorite songs Ya! Hay has been donated studio time!!!!! Thank you Ian Rolls and friends! !!!!
3. Camping, fishing and swimming
Thank you and please stay tuned for updates!
To find out more about Hayleys story:
Please visit the Hayley Rose Foundation website:
http://hayleyrosefoundation.org/
and Hayley Rose Foundation Facebook page:
https://www.facebook.com/HayleyRoseFoundation/
Organizer
Cheryl T Rose
Organizer
Vancouver , BC