ZOE VS. EPILEPSY--ZOE'S LIFE NOW
Donation protected
MID 2018 UPDATE--ZOE STILL NEEDS YOUR SUPPORT
My name is Alexandria Ledesma, I am 30 years old and I grew up in the Roaring Fork Valley. I am the mother of two amazing little girls. Akahia is 8 she is my inspired, loving, creative, talented, big sister. Zoe Alani is 4 and was born on July 17th 2013 at Valley View Hospital. Zoe has always been as a vivacious whirlwind of intelligence, beauty, and old lady charm. Always advanced, striving for abstract and universal thoughts from a young age. This is Zoes story, this is our story.
At age 3 on April 1st 2017 Zoe had her first tonic-clonic or Grand Mal seizure. Zoe was in Carbondale when she has her first seizure, she stopped breathing like she does every time. She was rushed to Valley View where she had another seizure, Valley View had no doctors to treat her so she was medically evacuated via airplane to Children’s Hospital in Denver. Absolutely nothing can prepare you for this.
Zoe arrived at Children’s in bad shape, she was aggressively reacting to the medication they gave her and had to be sedated. I was told she may never seize again, she continued to seize everyday. April 4th she was diagnosed with Epilepsy. Her doctors gave us a few courses of treatment CBD being one of them. Zoe acquired her Medical Cannabis license on April 8th and received her first dose of a pure CBD isolate that day. Her big TC’s or “Grand Mals” stopped that day and didn’t return for over a month. Unfortunately the next day a new seizure type started.
By the beginning of May after more testing, Zoe was diagnosed with Doose Syndrome Epilepsy or MAE. She was experiencing 4 types of seizures 24 hours a day. Your heart breaks and your mind goes into shock. Instead of freezing I began to study hard and found something called ketogenics, a special diet used to treat intractable or incurable epilepsy. Traditonal treatments DO NOT work for epileptic syndromes like Zoes. It is clearly stated in every medical resource. I began cutting out all the foods I was supposed to, and started the push to get her admitted to the ketogenic clinic at Childrens Hospital Colorado Anschutz.
Four seizure types were present in Zoe at this time. She had tonic-clonic or “grand-mal” seizures which is the most known type, these can last over 5 minutes her entire body convulses violently, Zoe stops breathing and her entire body becomes blue. She also experiences extreme unresponsive staring spells know as Absence seizures. Myoclonic seizures are small jerk seizures that usually occur in her sleep. Finally myoclonic-atonic seizure or” jerk-drop” seizures. This particular type causes grave injuries, Zoe jerks and the drops with the force of a sledge hammer and the body tone of a wet noodle hitting anything in her path. She was given a medical helmet.
By the middle of May 2017, Zoe was having hundreds of seizures a day, up to 1700. With thousands of sub-clinical seizures on top of those. She was in Status Epileptus or continually seizing. Any seizure activity lasting longer than 5 minutes qualifies as this. Her body began to shut down she stopped eating, drinking, walking, talking, playing, looking you in the eye. I was watching her fade away, my heart was shattered. She had another adverse reaction to medication and was locked in the cage bed for days again. This is when I decided to give her the first dose of 1:1 THC:CBD she immediately stopped seizing and came back to life She started talking, playing, eating, & walking within hours of her first dose. Her medical team was astounded with her progress knowing exactly what I had given her.
During that hospital stay I pushed very hard for her ketogenic admission. Typically patients have to fail multiple anti-epileptic drugs before the clinic, I refused to accept that as reality. It is my true belief that ketogenics is less effective for children after their systems have been trashed by multiple anti-epileptic drugs. Someone heard me, we were given the push through to the top of the keto list.
June 5th 2017 Zoe made history by becoming the earliest ketogenic admission from seizure onset. By day 5 of the diet, and week 3 of 1:1 THC:CBD, Zoe had a 75% reduction in seizures. Her violent drops went away completely and haven’t returned, and she had 29 days of seizure freedom in July. She slowly began to re-learn some of the numerous skills she lost from seizing so much. Everything Zoe eats is calculated and weighed out to the gram. Her rigorous regimen consisted of a dozen supplements and medications daily, everything that comes into contact with her is from a medically regulated list.
In August of 2017 Zoe was featured in Abbey Stoddard Lecture conference, they select 5 patients a year to use as education models. Zoes doctor and myself presented our findings while on stage with a well known Harvard medical Professor advocating for early intervention with alternative treatments. Zoe’s case will be used to help educate the next generation of neurologists.
Zoe had a rough Fall 2017, a lot of long tonic-clonics and at least 4 myoclonics every she slept. Continued oxygen issues made this period a tough one for us as her seizures remained nocturnal and would cause 60% oxygen levels she was re-classified from the 1 in 250 category to the 1 in 150 category for SUDEP risk. SUDEP id sudden unexplained death from epilepsy, and it kills 50,000 Americans each year. Many on them just like Zoe. She finally received her miracle Cannatol THC rescue spray which stops her big seizures in under 30 seconds, most of the time. Brave Zoe participated in the Childrens Hospitals/FDA’s CBD study, 10 blood draws in 10 hours. During this time we added atypical absence to our seizure type list. Through a seemingly impossible situation. I also went to school and took my state boards, passed and am now a licensed CNA. I am Zoes nurse and chart a total of 28 hours a week, or 4 hours a day. This is our income, just 20K gross a year.
The nightmare continued into Winter of 2017/2018 with multiple episodes of status over 6 minutes, rescue meds, 911, watching her live while blue in the face, literally. She was hospitalized for hypoxia, underwent and non-successful sleep study, multiple EEGs. She was in the hospital and ambulance so much that she contracted Norovirus, Coronavirus, and an ear infection. This threw her body out of ketosis and she continued to seize. We added both simple and complex partials, alongside tonics to our seizure types bringing our total to 8 types. By this point I went from waking up at 2am to only sleeping from 10pm to midnight like I do to this day.
Zoe was reclassified again in the SUDEP category to 1 in 100 due to discovered nocturnal dysregulation in her body, we finally get prescribed oxygen. We changed her Cannabis to a 2:1 THC:CBD made with THC distillate instead of RSO and increased her ketogenic ratio to 4:1. We started to wean her final AED Depakote due to its many side effects and lack of efficacy. During this time Zoe was also diagnosed with Ehlers-Danlos Syndrome type III and began getting Physical Therapy.
Spring 2018 is nearing its end and so much both good and bad happened. After weaning Depakote Zoe had 5 weeks 6 days seizure free, by far her longest yet. Unfortunately in March Zoe drank dirty water from the inside of a overseas toy and contracted a nasty stomach virus complete with 6 days on projectile vomiting. Seizure freedom went away and has only returned for 8 days since. In April we were incredibly blessed to go on Zoes Make-A-Wish to Give Kids The World Village in Flordia. It was beyond wonderful as Zoe was taken through the Magic Kingdom, as well as many other places as the true Warrior Princess she is. We returned and within a week or so my eldest became very ill, Zoe was quick to follow. They had somehow contracted both Influenza B and Parainfluenza 3 at the same time. It took until mid may for everone to kick all the viruses. They most likely from a combination of planes, traveling, clinics.
This is the point where it became crystal clear that Zoe needed a service dog, a seizure dog to protect her at all times from this Doose monster. Already in June Zoe has been hospitalized and gone into status three times with a nasty new seizure type and her first waking seizure in a year. A few days after we were released, on June 6th 2018, Zoe had an ECHO with Cardiology, it is an ultrasound to monitor and measure the heart. We did this due to our Ehlers Danlos with dyautonomia diagnosis. Well it came back ABNORMAL, Zoe has a DIALTED AORTA! This can end up being very dangerous causing ruptures, and we have now been admitted to the EDS or Ehlers-Danlos multidisciplinary clinic at Childrens. Zoe will be seen by a group of the top minds in the field allowing us to work together while saving time and maximizing Zoe’s success. Her team in adamant that due to the many types of seizures Zoe is having that the benefits of having a seizure dog FAR out way those of a traditional monitoring system.
We must be constantly vigilant. We have to consider every factor in every situation at all times noise, lighting, smells, time of day, proximity to medical help, level of activity, physical contact to triggers, just to name a few. Seemingly hundreds of tiny details go into every day just to keep the seizures away, hopefully. That doesn’t even cover regular life tasks. Having to say no to so much even though you really want to say yes. Either you work, or it works you. Epilepsy is a thief and will literally fry away every type of knowledge your brain and body has. There are so many of us out here fighting 24/7 there is nothing that feels like waiting, watching for the invisible, barley understood monster that is epilepsy. Epileptics and families need more support, this problem isn’t going away, it’s actually getting worse.
There are only 5,000 children in the US living with Doose Syndrome, unfortunately epilepsy affects 470,000 American children. 3.4 million Americans have Epilepsy and they can experience one or a mixture of 40 types of seizures. 65 million people on earth have epilepsy, only 4 out of every 1,000 lives with continuously active seizures like Zoe. 1/3 of epileptics have uncontrolled seizures and 6 out of 10 have no known cause. The per patient per year research funding from The National Institute of Health is only $46.44 compared to over $5,000 for non-violent behavioral research. 50,000 Americans will die this year from epilepsy that is more than Breast or Skin Cancer. Epilepsy is poorly understood, under supported and full of stigma, more needs to be done for all who are are suffering and fighting.
Cannabis and Ketogenics have saved my 4 year old Zoe from a life in a wheelchair with a feeding tube and poorly controlled seizures. We hope to open our own support foundation one day. We are here to raise awareness and funds for something that affects millions of Americans but is rarely spoken about. We are here to advocate for alternative treatments to all debilitating conditions. We are here to fight the good fight. As a family we will continue to advocate for cannabis, alternative treatments and awareness and support for Epilepsy. We need your continued support as our expenses to keep Zoe healthy, FAR outweigh our income.
Thank you all so much for taking your time to read this, we are truly blessed to have your support. You are all our epilepsy army, good humans, and dear friends. Go Purple For Zoe. Go Purple & Fight Epilepsy.
My name is Alexandria Ledesma, I am 30 years old and I grew up in the Roaring Fork Valley. I am the mother of two amazing little girls. Akahia is 8 she is my inspired, loving, creative, talented, big sister. Zoe Alani is 4 and was born on July 17th 2013 at Valley View Hospital. Zoe has always been as a vivacious whirlwind of intelligence, beauty, and old lady charm. Always advanced, striving for abstract and universal thoughts from a young age. This is Zoes story, this is our story.
At age 3 on April 1st 2017 Zoe had her first tonic-clonic or Grand Mal seizure. Zoe was in Carbondale when she has her first seizure, she stopped breathing like she does every time. She was rushed to Valley View where she had another seizure, Valley View had no doctors to treat her so she was medically evacuated via airplane to Children’s Hospital in Denver. Absolutely nothing can prepare you for this.
Zoe arrived at Children’s in bad shape, she was aggressively reacting to the medication they gave her and had to be sedated. I was told she may never seize again, she continued to seize everyday. April 4th she was diagnosed with Epilepsy. Her doctors gave us a few courses of treatment CBD being one of them. Zoe acquired her Medical Cannabis license on April 8th and received her first dose of a pure CBD isolate that day. Her big TC’s or “Grand Mals” stopped that day and didn’t return for over a month. Unfortunately the next day a new seizure type started.
By the beginning of May after more testing, Zoe was diagnosed with Doose Syndrome Epilepsy or MAE. She was experiencing 4 types of seizures 24 hours a day. Your heart breaks and your mind goes into shock. Instead of freezing I began to study hard and found something called ketogenics, a special diet used to treat intractable or incurable epilepsy. Traditonal treatments DO NOT work for epileptic syndromes like Zoes. It is clearly stated in every medical resource. I began cutting out all the foods I was supposed to, and started the push to get her admitted to the ketogenic clinic at Childrens Hospital Colorado Anschutz.
Four seizure types were present in Zoe at this time. She had tonic-clonic or “grand-mal” seizures which is the most known type, these can last over 5 minutes her entire body convulses violently, Zoe stops breathing and her entire body becomes blue. She also experiences extreme unresponsive staring spells know as Absence seizures. Myoclonic seizures are small jerk seizures that usually occur in her sleep. Finally myoclonic-atonic seizure or” jerk-drop” seizures. This particular type causes grave injuries, Zoe jerks and the drops with the force of a sledge hammer and the body tone of a wet noodle hitting anything in her path. She was given a medical helmet.
By the middle of May 2017, Zoe was having hundreds of seizures a day, up to 1700. With thousands of sub-clinical seizures on top of those. She was in Status Epileptus or continually seizing. Any seizure activity lasting longer than 5 minutes qualifies as this. Her body began to shut down she stopped eating, drinking, walking, talking, playing, looking you in the eye. I was watching her fade away, my heart was shattered. She had another adverse reaction to medication and was locked in the cage bed for days again. This is when I decided to give her the first dose of 1:1 THC:CBD she immediately stopped seizing and came back to life She started talking, playing, eating, & walking within hours of her first dose. Her medical team was astounded with her progress knowing exactly what I had given her.
During that hospital stay I pushed very hard for her ketogenic admission. Typically patients have to fail multiple anti-epileptic drugs before the clinic, I refused to accept that as reality. It is my true belief that ketogenics is less effective for children after their systems have been trashed by multiple anti-epileptic drugs. Someone heard me, we were given the push through to the top of the keto list.
June 5th 2017 Zoe made history by becoming the earliest ketogenic admission from seizure onset. By day 5 of the diet, and week 3 of 1:1 THC:CBD, Zoe had a 75% reduction in seizures. Her violent drops went away completely and haven’t returned, and she had 29 days of seizure freedom in July. She slowly began to re-learn some of the numerous skills she lost from seizing so much. Everything Zoe eats is calculated and weighed out to the gram. Her rigorous regimen consisted of a dozen supplements and medications daily, everything that comes into contact with her is from a medically regulated list.
In August of 2017 Zoe was featured in Abbey Stoddard Lecture conference, they select 5 patients a year to use as education models. Zoes doctor and myself presented our findings while on stage with a well known Harvard medical Professor advocating for early intervention with alternative treatments. Zoe’s case will be used to help educate the next generation of neurologists.
Zoe had a rough Fall 2017, a lot of long tonic-clonics and at least 4 myoclonics every she slept. Continued oxygen issues made this period a tough one for us as her seizures remained nocturnal and would cause 60% oxygen levels she was re-classified from the 1 in 250 category to the 1 in 150 category for SUDEP risk. SUDEP id sudden unexplained death from epilepsy, and it kills 50,000 Americans each year. Many on them just like Zoe. She finally received her miracle Cannatol THC rescue spray which stops her big seizures in under 30 seconds, most of the time. Brave Zoe participated in the Childrens Hospitals/FDA’s CBD study, 10 blood draws in 10 hours. During this time we added atypical absence to our seizure type list. Through a seemingly impossible situation. I also went to school and took my state boards, passed and am now a licensed CNA. I am Zoes nurse and chart a total of 28 hours a week, or 4 hours a day. This is our income, just 20K gross a year.
The nightmare continued into Winter of 2017/2018 with multiple episodes of status over 6 minutes, rescue meds, 911, watching her live while blue in the face, literally. She was hospitalized for hypoxia, underwent and non-successful sleep study, multiple EEGs. She was in the hospital and ambulance so much that she contracted Norovirus, Coronavirus, and an ear infection. This threw her body out of ketosis and she continued to seize. We added both simple and complex partials, alongside tonics to our seizure types bringing our total to 8 types. By this point I went from waking up at 2am to only sleeping from 10pm to midnight like I do to this day.
Zoe was reclassified again in the SUDEP category to 1 in 100 due to discovered nocturnal dysregulation in her body, we finally get prescribed oxygen. We changed her Cannabis to a 2:1 THC:CBD made with THC distillate instead of RSO and increased her ketogenic ratio to 4:1. We started to wean her final AED Depakote due to its many side effects and lack of efficacy. During this time Zoe was also diagnosed with Ehlers-Danlos Syndrome type III and began getting Physical Therapy.
Spring 2018 is nearing its end and so much both good and bad happened. After weaning Depakote Zoe had 5 weeks 6 days seizure free, by far her longest yet. Unfortunately in March Zoe drank dirty water from the inside of a overseas toy and contracted a nasty stomach virus complete with 6 days on projectile vomiting. Seizure freedom went away and has only returned for 8 days since. In April we were incredibly blessed to go on Zoes Make-A-Wish to Give Kids The World Village in Flordia. It was beyond wonderful as Zoe was taken through the Magic Kingdom, as well as many other places as the true Warrior Princess she is. We returned and within a week or so my eldest became very ill, Zoe was quick to follow. They had somehow contracted both Influenza B and Parainfluenza 3 at the same time. It took until mid may for everone to kick all the viruses. They most likely from a combination of planes, traveling, clinics.
This is the point where it became crystal clear that Zoe needed a service dog, a seizure dog to protect her at all times from this Doose monster. Already in June Zoe has been hospitalized and gone into status three times with a nasty new seizure type and her first waking seizure in a year. A few days after we were released, on June 6th 2018, Zoe had an ECHO with Cardiology, it is an ultrasound to monitor and measure the heart. We did this due to our Ehlers Danlos with dyautonomia diagnosis. Well it came back ABNORMAL, Zoe has a DIALTED AORTA! This can end up being very dangerous causing ruptures, and we have now been admitted to the EDS or Ehlers-Danlos multidisciplinary clinic at Childrens. Zoe will be seen by a group of the top minds in the field allowing us to work together while saving time and maximizing Zoe’s success. Her team in adamant that due to the many types of seizures Zoe is having that the benefits of having a seizure dog FAR out way those of a traditional monitoring system.
We must be constantly vigilant. We have to consider every factor in every situation at all times noise, lighting, smells, time of day, proximity to medical help, level of activity, physical contact to triggers, just to name a few. Seemingly hundreds of tiny details go into every day just to keep the seizures away, hopefully. That doesn’t even cover regular life tasks. Having to say no to so much even though you really want to say yes. Either you work, or it works you. Epilepsy is a thief and will literally fry away every type of knowledge your brain and body has. There are so many of us out here fighting 24/7 there is nothing that feels like waiting, watching for the invisible, barley understood monster that is epilepsy. Epileptics and families need more support, this problem isn’t going away, it’s actually getting worse.
There are only 5,000 children in the US living with Doose Syndrome, unfortunately epilepsy affects 470,000 American children. 3.4 million Americans have Epilepsy and they can experience one or a mixture of 40 types of seizures. 65 million people on earth have epilepsy, only 4 out of every 1,000 lives with continuously active seizures like Zoe. 1/3 of epileptics have uncontrolled seizures and 6 out of 10 have no known cause. The per patient per year research funding from The National Institute of Health is only $46.44 compared to over $5,000 for non-violent behavioral research. 50,000 Americans will die this year from epilepsy that is more than Breast or Skin Cancer. Epilepsy is poorly understood, under supported and full of stigma, more needs to be done for all who are are suffering and fighting.
Cannabis and Ketogenics have saved my 4 year old Zoe from a life in a wheelchair with a feeding tube and poorly controlled seizures. We hope to open our own support foundation one day. We are here to raise awareness and funds for something that affects millions of Americans but is rarely spoken about. We are here to advocate for alternative treatments to all debilitating conditions. We are here to fight the good fight. As a family we will continue to advocate for cannabis, alternative treatments and awareness and support for Epilepsy. We need your continued support as our expenses to keep Zoe healthy, FAR outweigh our income.
Thank you all so much for taking your time to read this, we are truly blessed to have your support. You are all our epilepsy army, good humans, and dear friends. Go Purple For Zoe. Go Purple & Fight Epilepsy.
Organizer
Alexandria Ledesma
Organizer
Denver, CO