Help Akin Live Seizure Free
Donation protected
Akinola is my first cousin. His mother is my mother's youngest sibling and like a big sister and second mother to me.
Her son, Akinola, was born on the in 2010, after 6 years of marriage and several failed IVFs.
He was conceived through fertility treatment and, according to his mother, was born as a healthy baby. He cried once he was delivered via C-section. His mum suffered from placenta abruptio and he had severe jaundice. He also became hypoglycemic because he was not well cared for by the hospital staff who were meant to care for him.
He met his milestone for the first 3 months but he became restless at around four months. He would only suck on the left breast and his mum noticed that he began to squint and he kept looking at his nose and would not maintain eye contact.
He is his mother's first child and as a new mum she didn’t notice that anything was off as he developed. He jerked very often and seemed to be startled often. His arms and legs flayed often but these movements though strange were no cause for alarm until he was about 9 months old. He was taken to the pediatrician often but his parents were assured that he was fine.
It was finally recommended that an EEG was done at nine months when there was no improvement in the jerks. His mother was given the terrible diagnosis of West Syndrome and it’s been a devastating and distressing journey since then.
She is a single mother with another child and this journey is taking its toll on her financially, emotionally and psychologically. Not to mention the strain on her second child who needs her also.
He had a wonderful Pediatric neurologists who gave the initial diagnosis and treatment commenced immediately. Unfortunately his seizures have proven to be intractable and unresponsive to all AEDs. His mum has tried steroids, phenobarbitals and even tried Vigabatrin all with no success. He is currently on several medications which are not helping to improve the seizures and also have side effects.
His mother has also tried alternative therapy, magnesium supplements and baths, massages, essential oils, occupational therapy and physiotherapy, speech and language therapy, play therapy and music therapy. He responded a bit to music therapy but it was only for a short period.
She has also tried the ketogenic diet which seemed to reduce the frequency and intensity of the seizures but he had severe kidney stones (because of the high fat) and suffered for months before he finally passed the stones. The family doctor wasn’t able to diagnose him until there was physical evidence. He suffered greatly for months and his seizures worsened.
She has tried using CBD oil also but the seizures worsened. He was prescribed this by his pediatric neurologist.
As he has grown older his seizures have worsened and even newer seizures have emerged. He began to have multiple seizures with his Salam attacks. He started having Tomic clonics, Myoclonics and absence seizures.
In June 2019 he had Status seizures which lasted for almost four days. Thankfully on day four he was given Phenytoin intravenously and the seizures subsided. As a result of the status epilepsy he suffered paralysis and was unable to eat, drink or walk for about a week. He recovered eventually but he regressed significantly.
Over the years he has become hyperactive, he seems to be on the Autism spectrum, he has very little speech, cannot feed or change himself without assistance, he has myoclonic and drop seizures daily. He also has tonic clonic seizures at least 3 times weekly usually at night or early in the morning. He is severely mentally delayed and cannot function without constant support.
I’m a cousin, niece and sister looking for any help I can find. His mother is exhausted and desperate for anything that will give him a semblance of a normal life. She also needs a break as he requires 24-hour care and often sleepless nights.
He wants to live and he has a lot of fight still left in him.
Please help Akin live life seizure free. I believe this is possible.
The donations will be used towards his care, medications, sensory toys, equipment and therapies needed for him and his family to live as close to a normal life as possible.
Her son, Akinola, was born on the in 2010, after 6 years of marriage and several failed IVFs.
He was conceived through fertility treatment and, according to his mother, was born as a healthy baby. He cried once he was delivered via C-section. His mum suffered from placenta abruptio and he had severe jaundice. He also became hypoglycemic because he was not well cared for by the hospital staff who were meant to care for him.
He met his milestone for the first 3 months but he became restless at around four months. He would only suck on the left breast and his mum noticed that he began to squint and he kept looking at his nose and would not maintain eye contact.
He is his mother's first child and as a new mum she didn’t notice that anything was off as he developed. He jerked very often and seemed to be startled often. His arms and legs flayed often but these movements though strange were no cause for alarm until he was about 9 months old. He was taken to the pediatrician often but his parents were assured that he was fine.
It was finally recommended that an EEG was done at nine months when there was no improvement in the jerks. His mother was given the terrible diagnosis of West Syndrome and it’s been a devastating and distressing journey since then.
She is a single mother with another child and this journey is taking its toll on her financially, emotionally and psychologically. Not to mention the strain on her second child who needs her also.
He had a wonderful Pediatric neurologists who gave the initial diagnosis and treatment commenced immediately. Unfortunately his seizures have proven to be intractable and unresponsive to all AEDs. His mum has tried steroids, phenobarbitals and even tried Vigabatrin all with no success. He is currently on several medications which are not helping to improve the seizures and also have side effects.
His mother has also tried alternative therapy, magnesium supplements and baths, massages, essential oils, occupational therapy and physiotherapy, speech and language therapy, play therapy and music therapy. He responded a bit to music therapy but it was only for a short period.
She has also tried the ketogenic diet which seemed to reduce the frequency and intensity of the seizures but he had severe kidney stones (because of the high fat) and suffered for months before he finally passed the stones. The family doctor wasn’t able to diagnose him until there was physical evidence. He suffered greatly for months and his seizures worsened.
She has tried using CBD oil also but the seizures worsened. He was prescribed this by his pediatric neurologist.
As he has grown older his seizures have worsened and even newer seizures have emerged. He began to have multiple seizures with his Salam attacks. He started having Tomic clonics, Myoclonics and absence seizures.
In June 2019 he had Status seizures which lasted for almost four days. Thankfully on day four he was given Phenytoin intravenously and the seizures subsided. As a result of the status epilepsy he suffered paralysis and was unable to eat, drink or walk for about a week. He recovered eventually but he regressed significantly.
Over the years he has become hyperactive, he seems to be on the Autism spectrum, he has very little speech, cannot feed or change himself without assistance, he has myoclonic and drop seizures daily. He also has tonic clonic seizures at least 3 times weekly usually at night or early in the morning. He is severely mentally delayed and cannot function without constant support.
I’m a cousin, niece and sister looking for any help I can find. His mother is exhausted and desperate for anything that will give him a semblance of a normal life. She also needs a break as he requires 24-hour care and often sleepless nights.
He wants to live and he has a lot of fight still left in him.
Please help Akin live life seizure free. I believe this is possible.
The donations will be used towards his care, medications, sensory toys, equipment and therapies needed for him and his family to live as close to a normal life as possible.
Co-organizers (2)
Seun Oratokhai
Organizer
England
Ebun Roberts
Co-organizer