Naia Needs Seizure Treatment
Donation protected
Aloha ~
We would like to express our continual gratitude to all of our friends and family who have supported us along the way. It has been a pretty hard journey.
For those that do not know, Naia, our 2 year old daughter, has a severe and rare form of epilepsy known as Migrating Partial Seizures of Infancy (MPSI). She is on the lighter end of the spectrum of this disorder, for which we are grateful (no feeding tubes, no oxygen tanks, no weeks to months at a time in a hospital repeatedly, and sheʻs made it past 2 years, which is huge). That said, life for Naia is not easy. Her seizures literally rob her of physical and mental development – they take so much from her and give nothing back. She cannot sit, crawl, walk or talk and her vision is impaired. Her seizures hit in waves, weʻll have some lighter months and then some more intense ones. The number of seizures and the intensity of her seizures vary greatly. Looking at the trends over time, the severity of her seizures have become less (knock on a fat piece of wood).
Sadly, though her seizure intensity has decreased, she is plagued with some sort of gastric/stomach pain, or cerebral irritation; we and no specialist we have taken her to, know what or why - but she will be screaming in pain for days and nights on end. To the point where her voice is hoarse. To the point where we cannot believe she doesn’t pass out from exhaustion. To the point of where we are close to loosing our own minds as NOTHING will soothe her.
When we take her to the drs, they say “our heart breaks for you” – thatʻs it. Thatʻs all they have to offer us at this point. Our neurologist can only suggest new medications – none of which have worked in the past, and which took us 6 horrible months to wean her off of. Donʻt get me wrong, we love our dr.ʻs. We know they care. They just have nothing left to offer. Weʻve done all their tests, weʻve tried the various medications taking the chance of what the horrible side effects may do. Weʻve gone beyond them, to more eastern influenced medicine. Weʻve seen cranial sacral therapists, acupuncturists, massage therapist, chiropractors, Hawaiian Huli Opu practiioners, tried ayurvedic diets, CBD oils, gluten-free, diary-free, low fod map diets …weʻve even gone to a psychic. Nothing has helped. Nothing. It is exhausting. And devastating. These past 8 months weʻve stopped trying so hard to find answers. We were tired of so much disappointment. Of thinking this might be it! (and when I say it! I mean something to improve her life a little, to advance her progress a little – not an end all cure all). But something has to give. She lives her life in so much pain. And it breaks our hearts every day that there is nothing we can do to help her.
If this is news to you and you are a friend, itʻs because we try to paint a different picture on social media and when we are out in the community. You may hear us respond to the question of “How is Naia?” With “Good days, bad days”…and today is a good day or today is not so great. Thatʻs about all we can give because when we start to tell the whole story either we break down or we have found the listener is not able to hold our truth. We have seen friendships drift away and that is a different type of heartbreak. We have also seen them grow stronger and we are ever more thankful for that.
We have been humbled by this experience to say the least. We have been striped raw and undone only to pick up the pieces and put them back together, as best we can, knowing that it will all be undone again in a matter of time. I donʻt mean to sound dramatic here…I am trying to be honest. Itʻs important for you to know this background so that you can understand why we are seeking treatments in Ecuador and asking for your help to get us there.
We learned about Ecuador from one of Samʻs co-workers. Her best friend in Florida has a 2-year-old son with a similar condition to Naia and they went to this clinic to seek treatments. We have talked extensively with this family about the clinic and the treatments, where they have seen some great improvements for their son. This clinic flies a bit under the radar – they do not advertise. Though some might find this questionable, we find it reassuring in a sense that we feel we arenʻt being “convinced or sold” on a promising new treatment – we are learning about this clinic from other parents who have taken their kids with similar neurological disorders and have seen tangible improvements.
Typical treatments are for about 1 month. If it doesn’t work, there are no harmful side effects. And even if we get just a little out of this, if Naia can learn to better communicate through the use of her hands, sounds, eye contact – anything – that would be better than where we are now. Sheʻs in there, sheʻs smart & sweet and she knows what she wants and needs. She just needs to a little help to be able to communicate with us. We arenʻt looking to these treatments as the savior to Naiaʻs problems, but rather, hoping it can be stepping stone to advance her development or reduce her seizures if even just a little. We are tired of watching our drs here shrug their shoulders while Naia remains in pain and progress is minimal.
The treatment is complex – but in basic form it looks to balance Alpha, Beta, Theta and Delta wave forms in the brain while also breaking down scar tissue. They do EEGs and brain mapping to assess where Naiaʻs neurological functions and dysfunctions are. There are two doctors at the clinic who have been working on these treatments for over 30 years. One is a Bioneurophysiologist and the other is an Otolaryngologist. The clinic is located in Guayaquil Ecuador and our appointment is set for July 10, 2017.
If youʻd like to learn more about the treatments, contact us directly and we will happily share what we know. Why this clinic is in Ecudador, we do not know, but we will be happy to tell you when we come back.
The cost of the trip is around 20,000k. This will help us cover food, hotel, airfare and the treatments. We have to fly all three of us out (mom, dad, Naia – sheʻs 2 now so we have to buy her a tix) and we also are hoping to bring a good friend who is a native Spanish speaker to help us navigate and communicate with the drʻs and people there (I speak high school level Spanish, Sam speaks none).
After reflecting on the road weʻve been down – and where we and Naia are today, we have to at least try.
We truly appreciate any help you can give to support us on this journey. As always, we are cautiously optimistic. Thank you for reading our story and potentially helping Naia.
Mahalo,
Sam, Sonya, and Naia
We would like to express our continual gratitude to all of our friends and family who have supported us along the way. It has been a pretty hard journey.
For those that do not know, Naia, our 2 year old daughter, has a severe and rare form of epilepsy known as Migrating Partial Seizures of Infancy (MPSI). She is on the lighter end of the spectrum of this disorder, for which we are grateful (no feeding tubes, no oxygen tanks, no weeks to months at a time in a hospital repeatedly, and sheʻs made it past 2 years, which is huge). That said, life for Naia is not easy. Her seizures literally rob her of physical and mental development – they take so much from her and give nothing back. She cannot sit, crawl, walk or talk and her vision is impaired. Her seizures hit in waves, weʻll have some lighter months and then some more intense ones. The number of seizures and the intensity of her seizures vary greatly. Looking at the trends over time, the severity of her seizures have become less (knock on a fat piece of wood).
Sadly, though her seizure intensity has decreased, she is plagued with some sort of gastric/stomach pain, or cerebral irritation; we and no specialist we have taken her to, know what or why - but she will be screaming in pain for days and nights on end. To the point where her voice is hoarse. To the point where we cannot believe she doesn’t pass out from exhaustion. To the point of where we are close to loosing our own minds as NOTHING will soothe her.
When we take her to the drs, they say “our heart breaks for you” – thatʻs it. Thatʻs all they have to offer us at this point. Our neurologist can only suggest new medications – none of which have worked in the past, and which took us 6 horrible months to wean her off of. Donʻt get me wrong, we love our dr.ʻs. We know they care. They just have nothing left to offer. Weʻve done all their tests, weʻve tried the various medications taking the chance of what the horrible side effects may do. Weʻve gone beyond them, to more eastern influenced medicine. Weʻve seen cranial sacral therapists, acupuncturists, massage therapist, chiropractors, Hawaiian Huli Opu practiioners, tried ayurvedic diets, CBD oils, gluten-free, diary-free, low fod map diets …weʻve even gone to a psychic. Nothing has helped. Nothing. It is exhausting. And devastating. These past 8 months weʻve stopped trying so hard to find answers. We were tired of so much disappointment. Of thinking this might be it! (and when I say it! I mean something to improve her life a little, to advance her progress a little – not an end all cure all). But something has to give. She lives her life in so much pain. And it breaks our hearts every day that there is nothing we can do to help her.
If this is news to you and you are a friend, itʻs because we try to paint a different picture on social media and when we are out in the community. You may hear us respond to the question of “How is Naia?” With “Good days, bad days”…and today is a good day or today is not so great. Thatʻs about all we can give because when we start to tell the whole story either we break down or we have found the listener is not able to hold our truth. We have seen friendships drift away and that is a different type of heartbreak. We have also seen them grow stronger and we are ever more thankful for that.
We have been humbled by this experience to say the least. We have been striped raw and undone only to pick up the pieces and put them back together, as best we can, knowing that it will all be undone again in a matter of time. I donʻt mean to sound dramatic here…I am trying to be honest. Itʻs important for you to know this background so that you can understand why we are seeking treatments in Ecuador and asking for your help to get us there.
We learned about Ecuador from one of Samʻs co-workers. Her best friend in Florida has a 2-year-old son with a similar condition to Naia and they went to this clinic to seek treatments. We have talked extensively with this family about the clinic and the treatments, where they have seen some great improvements for their son. This clinic flies a bit under the radar – they do not advertise. Though some might find this questionable, we find it reassuring in a sense that we feel we arenʻt being “convinced or sold” on a promising new treatment – we are learning about this clinic from other parents who have taken their kids with similar neurological disorders and have seen tangible improvements.
Typical treatments are for about 1 month. If it doesn’t work, there are no harmful side effects. And even if we get just a little out of this, if Naia can learn to better communicate through the use of her hands, sounds, eye contact – anything – that would be better than where we are now. Sheʻs in there, sheʻs smart & sweet and she knows what she wants and needs. She just needs to a little help to be able to communicate with us. We arenʻt looking to these treatments as the savior to Naiaʻs problems, but rather, hoping it can be stepping stone to advance her development or reduce her seizures if even just a little. We are tired of watching our drs here shrug their shoulders while Naia remains in pain and progress is minimal.
The treatment is complex – but in basic form it looks to balance Alpha, Beta, Theta and Delta wave forms in the brain while also breaking down scar tissue. They do EEGs and brain mapping to assess where Naiaʻs neurological functions and dysfunctions are. There are two doctors at the clinic who have been working on these treatments for over 30 years. One is a Bioneurophysiologist and the other is an Otolaryngologist. The clinic is located in Guayaquil Ecuador and our appointment is set for July 10, 2017.
If youʻd like to learn more about the treatments, contact us directly and we will happily share what we know. Why this clinic is in Ecudador, we do not know, but we will be happy to tell you when we come back.
The cost of the trip is around 20,000k. This will help us cover food, hotel, airfare and the treatments. We have to fly all three of us out (mom, dad, Naia – sheʻs 2 now so we have to buy her a tix) and we also are hoping to bring a good friend who is a native Spanish speaker to help us navigate and communicate with the drʻs and people there (I speak high school level Spanish, Sam speaks none).
After reflecting on the road weʻve been down – and where we and Naia are today, we have to at least try.
We truly appreciate any help you can give to support us on this journey. As always, we are cautiously optimistic. Thank you for reading our story and potentially helping Naia.
Mahalo,
Sam, Sonya, and Naia
Organizer and beneficiary
Nicole Spalding
Organizer
Kula, HI
Sonya Niess
Beneficiary
