Help Annabelle fund Brain Surgery in the USA
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Help me fund Brain Surgery in the USA – The First Step to Achieving my Dreams:
Help send Annabelle to Minnesota for Critical Care
I am an 18-year-old Canadian girl from Oakbluff, Manitoba. I am set to graduate from high school at the end of this month, my whole life is ahead of me and most would say there are endless opportunities for someone my age- but this is not true. I was first diagnosed with Epilepsy at 13 years old and it has consumed all that I am since then. All my friends are preparing to move forward with post-secondary, stressing about entrance essays and acceptance letters …… I have not even been able to apply to college or university as my future is so uncertain. The seizures I experience are very prohibitive and when I have one, I am out of commission for the next several days.
Instead of applying to college or universities to jumpstart a career like all my peers, I have been given the damning news that the doctors in Manitoba simply do not know what to do with my epilepsy. 5 years living with epilepsy and I am no closer to understanding how to manage or cope with my illness. Unlike my friends I could not participate in all those typical childhood things like sleepovers, since my diagnosis I’ve had to have another person sleep in the room to ensure I am taken care of when I seizure and do not aspirate, bleed or hurt myself. The thing that keeps me up at night is the fact that I am susceptible to SUDEP (sudden death due to epilepsy Sudden Unexpected Death in Epilepsy).
Every night, someone from my family or friends must be with me when I fall asleep, sleep with me through the night and be there when I wake up to ensure that I am taken care of when I seizure in the night and/or to avoid SUDEP to the best of our ability.
( https://www.epilepsy.com/learn/early-death-and-sudep/sudep ) .
Epilepsy prevents me from chasing my dream, to be a paramedic. My goal is to become a paramedic, to save people in emergency situations and to ultimately help other people. With epilepsy I experience Generalized Tonic Clonic seizures or Grand Mal Seizures, Focal Impaired Awareness Seizures and Focal to Bilateral Tonic Clonic (the onset can be aware or impaired aware). Due to my seizures I am unable to
obtain a driver’s license, a necessity to become a paramedic (without the ability to drive I cannot start the paramedicine courses). Unless I am seizure free for 1 year, I cannot even take the test to drive. Never mind the physical and neurological impacts that inhibit my ability to pursue post-secondary education.
After a 1+week study in hospital in January, experiencing a couple of different types of seizures including a tonic clonic seizure (Grand Mal).
The doctors have recommended more medication, with no additional clues/direction having been ascertained from the study. While I respect the advice from my health care practitioner, medication has not been easy for me .I have tried countless drugs/medications in the past 5 years with little success, I am allergic to the drug oxycarbazepine (which is a drug family member to many of the new generation drugs making them inaccessible for me), others make me vomit endlessly, some give me uncontrollable rage, none have effectively reduced my seizures . Most people my age, my friends, and peers, are excited for what the future holds but I am not. I cannot see any future for me as I continue to experience seizures, which greatly reduces the quality of my life, puts me at risk for death and clouds my future. Epilepsy has also impacted my school life as I often have experienced seizures which puts me out of commission for the following day, making me miss school, fall behind, and impact my memory making it extremely difficult to study or die due to SUDEP.
I have exhausted all medical options here in Manitoba, the doctors cannot pinpoint the source of my seizures and wish only to try more
medications. The only option in Canada is to go to London, Ontario, to conduct more brain studies and possibly surgery. However, they will not
put me on the waitlist. Thus, I am left with one option, my last hope. This is why I need you. I need you to help me raise funds to visit a world
class health facility in Minnesota. Coming from a middle-class family in Manitoba, we do not have the funds to attend an USA health care
facility. This is my last shot at living a normal life in the healthcare facility at the Mayo Clinic in Minnesota.
The Mayo Clinic in Minnesota, USA has a world class health care facility for epilepsy. At the Mayo clinic they have superior technology, which can pinpoint the source of my illness and treat it effectively. The possibility to live a normal life keeps me going, it gives me hope. It is my hope that the facility in Minnesota can give me a chance at a normal life and allow me to follow my dreams of becoming a paramedic. I need you to spread the word, help me raise funds, share this with your friends and family, raise awareness to the bleak situation that people experiencing epilepsy in Manitoba are facing.
You can read more about the Mayo Clinic at the link below and information about Epilepsy facts and myths have been put below.
https://www.mayoclinic.org/diseases-conditions/epilepsy/care-at-mayo-clinic/mac-20350102?f
bclid=IwAR0u6zOsT7YeKVsx3xNePwYVEEdmZ9D5VUwgyEija6CH901hfVW34jMhFPg
Budget - Taken from mayoclinic.org
Estimated costs: US funds
EEG - $885
PET - $6859
CT - $1207
MRI - $6215
Surgery including consult, hospital stay and fees $130,000.00
Further testing will be required: will not know what that will be until our first consultation. The
first consultation will cost upwards of $20,000.00.
Epilepsy Facts (Taken from Epilepsy.ca https://www.epilepsy.ca/epilepsy-facts.html )
● Epilepsy is a physical condition characterized by sudden, brief changes in how the brain works.
It is a symptom of a neurological disorder - a disorder that affects the brain and shows itself in
the form of seizures.
● Epilepsy is a disorder, not a disease; it is not contagious.
● Approximately 0.6% of the Canadian population has epilepsy. This includes those who take
anticonvulsant drugs or who had a seizure within the past 5 years.
● Due to the stigma surrounding epilepsy and the prejudice with which society has historically
treated people with epilepsy, many with the disorder are reluctant to admit it or to seek
treatment. Thus the prevalence of epilepsy is likely much higher.
● Each day in Canada, an average of 42 people learn that they have epilepsy. Each year an
average of 15,500 people learn they have epilepsy; 44% are diagnosed before the age of 5, 55%
before the age of 10, 75-85% before age 18 and 1% of children will have recurrent seizures
before age 14. 1.3% are over the age of 60. This means that about 60% of new patients are
young children and senior citizens.
● Events that may trigger seizures include: stress, poor nutrition, flickering lights,
skipping meals, illness, fever and allergies, lack of sleep, emotions such as anger, worry,
fear and others, heat and/or humidity.
● The major form of treatment is long-term drug therapy. Drugs are not a cure and can
have numerous, sometimes severe, side effects.
● Brain surgery is recommended only when medication fails and when the seizures are
confined to one area of the brain where brain tissue can be safely removed without
damaging personality or function.
Myths-Misconceptions: (from epilepsy.ca)
1. You can swallow your tongue during a seizure. It's physically impossible to swallow your tongue.
2. You should force something into the mouth of someone having a seizure. Absolutely not! That's a good
way to chip teeth, puncture gums, or even break someone's jaw. The correct first aid is simple. Just gently roll
the person on one side and put something soft under his head to protect him from getting injured.
3. You should restrain someone having a seizure. Never use restraint! The seizure will run its course and you
can not stop it.
4. Epilepsy is contagious. About as contagious as a gunshot wound! You simply can't catch epilepsy from
another person.
5. Only kids get epilepsy. Epilepsy happens to people over age 65 almost as often as it does to children aged
ten and under. Seizures in the elderly are often the after effect of other health problems like stroke and heart
disease.
6. People with epilepsy are disabled and can't work. People with the condition have the same range of
abilities and intelligence as the rest of us. Some have severe seizures and cannot work; others are successful
and productive in challenging careers.
7. People with epilepsy shouldn't be in jobs of responsibility and stress. People with seizure disorders are
found in all walks of life and at all levels in business, government, the arts and the professions. We aren't
always aware of them because many people, even today, do not talk about having epilepsy for fear of what
others might think.
8. With today's medication, epilepsy is largely a solved problem. Epilepsy is a chronic medical problem that
for many people can be successfully treated. Unfortunately, treatment doesn't work for everyone and there's
a critical need for more research.
9. Epilepsy is rare and there aren't many people who have it . There are more than twice as many people
with epilepsy in Canada as the number of people with cerebral palsy (55,000), muscular dystrophy (28,000),
multiple sclerosis (39,000), and cystic fibrosis (3,400) combined. Epilepsy can occur as a single condition, or
may accompany other conditions affecting the brain, such as cerebral palsy, mental impairment, autism,
Alzheimer's, and traumatic brain injury.
10. You can't die from epilepsy. Epilepsy still can be a very serious condition and individuals do die of it.
Experts estimate that prolonged seizures (status epilepticus) are the cause of many deaths in Canada each
year.
Help send Annabelle to Minnesota for Critical Care
I am an 18-year-old Canadian girl from Oakbluff, Manitoba. I am set to graduate from high school at the end of this month, my whole life is ahead of me and most would say there are endless opportunities for someone my age- but this is not true. I was first diagnosed with Epilepsy at 13 years old and it has consumed all that I am since then. All my friends are preparing to move forward with post-secondary, stressing about entrance essays and acceptance letters …… I have not even been able to apply to college or university as my future is so uncertain. The seizures I experience are very prohibitive and when I have one, I am out of commission for the next several days.
Instead of applying to college or universities to jumpstart a career like all my peers, I have been given the damning news that the doctors in Manitoba simply do not know what to do with my epilepsy. 5 years living with epilepsy and I am no closer to understanding how to manage or cope with my illness. Unlike my friends I could not participate in all those typical childhood things like sleepovers, since my diagnosis I’ve had to have another person sleep in the room to ensure I am taken care of when I seizure and do not aspirate, bleed or hurt myself. The thing that keeps me up at night is the fact that I am susceptible to SUDEP (sudden death due to epilepsy Sudden Unexpected Death in Epilepsy).
Every night, someone from my family or friends must be with me when I fall asleep, sleep with me through the night and be there when I wake up to ensure that I am taken care of when I seizure in the night and/or to avoid SUDEP to the best of our ability.
( https://www.epilepsy.com/learn/early-death-and-sudep/sudep ) .
Epilepsy prevents me from chasing my dream, to be a paramedic. My goal is to become a paramedic, to save people in emergency situations and to ultimately help other people. With epilepsy I experience Generalized Tonic Clonic seizures or Grand Mal Seizures, Focal Impaired Awareness Seizures and Focal to Bilateral Tonic Clonic (the onset can be aware or impaired aware). Due to my seizures I am unable to
obtain a driver’s license, a necessity to become a paramedic (without the ability to drive I cannot start the paramedicine courses). Unless I am seizure free for 1 year, I cannot even take the test to drive. Never mind the physical and neurological impacts that inhibit my ability to pursue post-secondary education.
After a 1+week study in hospital in January, experiencing a couple of different types of seizures including a tonic clonic seizure (Grand Mal).
The doctors have recommended more medication, with no additional clues/direction having been ascertained from the study. While I respect the advice from my health care practitioner, medication has not been easy for me .I have tried countless drugs/medications in the past 5 years with little success, I am allergic to the drug oxycarbazepine (which is a drug family member to many of the new generation drugs making them inaccessible for me), others make me vomit endlessly, some give me uncontrollable rage, none have effectively reduced my seizures . Most people my age, my friends, and peers, are excited for what the future holds but I am not. I cannot see any future for me as I continue to experience seizures, which greatly reduces the quality of my life, puts me at risk for death and clouds my future. Epilepsy has also impacted my school life as I often have experienced seizures which puts me out of commission for the following day, making me miss school, fall behind, and impact my memory making it extremely difficult to study or die due to SUDEP.
I have exhausted all medical options here in Manitoba, the doctors cannot pinpoint the source of my seizures and wish only to try more
medications. The only option in Canada is to go to London, Ontario, to conduct more brain studies and possibly surgery. However, they will not
put me on the waitlist. Thus, I am left with one option, my last hope. This is why I need you. I need you to help me raise funds to visit a world
class health facility in Minnesota. Coming from a middle-class family in Manitoba, we do not have the funds to attend an USA health care
facility. This is my last shot at living a normal life in the healthcare facility at the Mayo Clinic in Minnesota.
The Mayo Clinic in Minnesota, USA has a world class health care facility for epilepsy. At the Mayo clinic they have superior technology, which can pinpoint the source of my illness and treat it effectively. The possibility to live a normal life keeps me going, it gives me hope. It is my hope that the facility in Minnesota can give me a chance at a normal life and allow me to follow my dreams of becoming a paramedic. I need you to spread the word, help me raise funds, share this with your friends and family, raise awareness to the bleak situation that people experiencing epilepsy in Manitoba are facing.
You can read more about the Mayo Clinic at the link below and information about Epilepsy facts and myths have been put below.
https://www.mayoclinic.org/diseases-conditions/epilepsy/care-at-mayo-clinic/mac-20350102?f
bclid=IwAR0u6zOsT7YeKVsx3xNePwYVEEdmZ9D5VUwgyEija6CH901hfVW34jMhFPg
Budget - Taken from mayoclinic.org
Estimated costs: US funds
EEG - $885
PET - $6859
CT - $1207
MRI - $6215
Surgery including consult, hospital stay and fees $130,000.00
Further testing will be required: will not know what that will be until our first consultation. The
first consultation will cost upwards of $20,000.00.
Epilepsy Facts (Taken from Epilepsy.ca https://www.epilepsy.ca/epilepsy-facts.html )
● Epilepsy is a physical condition characterized by sudden, brief changes in how the brain works.
It is a symptom of a neurological disorder - a disorder that affects the brain and shows itself in
the form of seizures.
● Epilepsy is a disorder, not a disease; it is not contagious.
● Approximately 0.6% of the Canadian population has epilepsy. This includes those who take
anticonvulsant drugs or who had a seizure within the past 5 years.
● Due to the stigma surrounding epilepsy and the prejudice with which society has historically
treated people with epilepsy, many with the disorder are reluctant to admit it or to seek
treatment. Thus the prevalence of epilepsy is likely much higher.
● Each day in Canada, an average of 42 people learn that they have epilepsy. Each year an
average of 15,500 people learn they have epilepsy; 44% are diagnosed before the age of 5, 55%
before the age of 10, 75-85% before age 18 and 1% of children will have recurrent seizures
before age 14. 1.3% are over the age of 60. This means that about 60% of new patients are
young children and senior citizens.
● Events that may trigger seizures include: stress, poor nutrition, flickering lights,
skipping meals, illness, fever and allergies, lack of sleep, emotions such as anger, worry,
fear and others, heat and/or humidity.
● The major form of treatment is long-term drug therapy. Drugs are not a cure and can
have numerous, sometimes severe, side effects.
● Brain surgery is recommended only when medication fails and when the seizures are
confined to one area of the brain where brain tissue can be safely removed without
damaging personality or function.
Myths-Misconceptions: (from epilepsy.ca)
1. You can swallow your tongue during a seizure. It's physically impossible to swallow your tongue.
2. You should force something into the mouth of someone having a seizure. Absolutely not! That's a good
way to chip teeth, puncture gums, or even break someone's jaw. The correct first aid is simple. Just gently roll
the person on one side and put something soft under his head to protect him from getting injured.
3. You should restrain someone having a seizure. Never use restraint! The seizure will run its course and you
can not stop it.
4. Epilepsy is contagious. About as contagious as a gunshot wound! You simply can't catch epilepsy from
another person.
5. Only kids get epilepsy. Epilepsy happens to people over age 65 almost as often as it does to children aged
ten and under. Seizures in the elderly are often the after effect of other health problems like stroke and heart
disease.
6. People with epilepsy are disabled and can't work. People with the condition have the same range of
abilities and intelligence as the rest of us. Some have severe seizures and cannot work; others are successful
and productive in challenging careers.
7. People with epilepsy shouldn't be in jobs of responsibility and stress. People with seizure disorders are
found in all walks of life and at all levels in business, government, the arts and the professions. We aren't
always aware of them because many people, even today, do not talk about having epilepsy for fear of what
others might think.
8. With today's medication, epilepsy is largely a solved problem. Epilepsy is a chronic medical problem that
for many people can be successfully treated. Unfortunately, treatment doesn't work for everyone and there's
a critical need for more research.
9. Epilepsy is rare and there aren't many people who have it . There are more than twice as many people
with epilepsy in Canada as the number of people with cerebral palsy (55,000), muscular dystrophy (28,000),
multiple sclerosis (39,000), and cystic fibrosis (3,400) combined. Epilepsy can occur as a single condition, or
may accompany other conditions affecting the brain, such as cerebral palsy, mental impairment, autism,
Alzheimer's, and traumatic brain injury.
10. You can't die from epilepsy. Epilepsy still can be a very serious condition and individuals do die of it.
Experts estimate that prolonged seizures (status epilepticus) are the cause of many deaths in Canada each
year.
Fundraising team: Team Kickbutt (3)
Annabelle Farrell
Organizer
Oak Bluff, MB
Jodi Sheppard
Team member
Jacob Woodbeck
Team member