Campaign extended!
Our deadline has passed but you can still help.
✕
Give Jazir back a childhood lost to brain injury.
My son Jazir lost the prime years of his childhood to a traumatic brain injury. He doesn't have to lose the rest of his life to it. We, the adults in his life teamed up with the right medical professionals, can heal him. We know how. We need your help to cover the costs.
Jazir has spent the majority of the past six years struggling to make sense of the world around him, while we struggled to make sense of what was happening to him. When he should have been playing in grassy fields, splashing in guppy-filled ponds, getting into little-boy mischief and climbing every tree he could find, he was instead losing his vision, including the ability to recognize even me, his mother, by my face, losing motor skills, losing his ability to feed and dress himself and eventually losing almost all cognition and language.
He will never get back the years he has lost, but I can do my best to be sure he doesn't miss out on any more. I have found the right team of professionals to help him; now I need to cover costs and get down to work. By this time next year, he could be fully recovered.. out of the doctor's office and into the world again!
Jazir's formal diagnoses are as follows: Retractable Epilepsy, Cortical Visual Impairment, Visual Aphasia and Landau-Kleffner Syndrome. He has endured numerous ambulance rides, hospital stays and far, far, far too many hours spent waiting in doctor's offices. As of January 2013, we were told that if his decline continued, we would lose him. He would die.
I have spent countless hours reading, researching, asking questions, demanding answers, reaching out to other parents, diving down rabbit holes to find nothing but myth at the bottom, speaking to one specialist after another after another, some helpful, others passing us off to the next because Jazir's incredibly rare combination of symptoms and diagnoses simply falls outside their scope. In our medical system in Canada, as grateful for it as I am, if one does not fit into a check-box, getting the proper care one needs can be an exceedingly challenging and exhausting endeavour. Tenacity and audacious self-advocacy are essential if one is to have any hope of winding her way through to resolutions, true healing and the real care required as opposed to spending a lifetime treating symptoms with very little to no real impact on root cause. Care for a loved one with a severe illness, in our case traumatic brain injury, becomes a full-time, all-consuming commitment.
Throughout the seemingly endless process of searching for answers, one piece of information led me to another and so on and eventually I came across an institute in the US that has specialized in treating children with brain injury for more than five decades. I dug deeper. I made inquiries. I had a hunch I was onto something. I met other parents who had worked with the staff at the Institutes and had incredible stories to share with me of how they had implemented treatment programs with their children and about the astounding results they had achieved. I knew I was onto something.
Finally, after more than a year of research, all the while struggling with the grief and loss and coping with witnessing the persistent decline of my son's abilities, I have found a place that understands in great detail what I have been through, what he has been through and what needs to be done to heal his injury at source and bring him back to his fully developed and vital self.
Please help me to help him get there. He is a darling, sweet little boy who deserves a chance to live his life in peace in his full and remarkable potential. I fear what the future holds for him if we lose any more time and sense of Self to this dreadful and debilitating injury.
Jazir has spent the majority of the past six years struggling to make sense of the world around him, while we struggled to make sense of what was happening to him. When he should have been playing in grassy fields, splashing in guppy-filled ponds, getting into little-boy mischief and climbing every tree he could find, he was instead losing his vision, including the ability to recognize even me, his mother, by my face, losing motor skills, losing his ability to feed and dress himself and eventually losing almost all cognition and language.
He will never get back the years he has lost, but I can do my best to be sure he doesn't miss out on any more. I have found the right team of professionals to help him; now I need to cover costs and get down to work. By this time next year, he could be fully recovered.. out of the doctor's office and into the world again!
Jazir's formal diagnoses are as follows: Retractable Epilepsy, Cortical Visual Impairment, Visual Aphasia and Landau-Kleffner Syndrome. He has endured numerous ambulance rides, hospital stays and far, far, far too many hours spent waiting in doctor's offices. As of January 2013, we were told that if his decline continued, we would lose him. He would die.
I have spent countless hours reading, researching, asking questions, demanding answers, reaching out to other parents, diving down rabbit holes to find nothing but myth at the bottom, speaking to one specialist after another after another, some helpful, others passing us off to the next because Jazir's incredibly rare combination of symptoms and diagnoses simply falls outside their scope. In our medical system in Canada, as grateful for it as I am, if one does not fit into a check-box, getting the proper care one needs can be an exceedingly challenging and exhausting endeavour. Tenacity and audacious self-advocacy are essential if one is to have any hope of winding her way through to resolutions, true healing and the real care required as opposed to spending a lifetime treating symptoms with very little to no real impact on root cause. Care for a loved one with a severe illness, in our case traumatic brain injury, becomes a full-time, all-consuming commitment.
Throughout the seemingly endless process of searching for answers, one piece of information led me to another and so on and eventually I came across an institute in the US that has specialized in treating children with brain injury for more than five decades. I dug deeper. I made inquiries. I had a hunch I was onto something. I met other parents who had worked with the staff at the Institutes and had incredible stories to share with me of how they had implemented treatment programs with their children and about the astounding results they had achieved. I knew I was onto something.
Finally, after more than a year of research, all the while struggling with the grief and loss and coping with witnessing the persistent decline of my son's abilities, I have found a place that understands in great detail what I have been through, what he has been through and what needs to be done to heal his injury at source and bring him back to his fully developed and vital self.
Please help me to help him get there. He is a darling, sweet little boy who deserves a chance to live his life in peace in his full and remarkable potential. I fear what the future holds for him if we lose any more time and sense of Self to this dreadful and debilitating injury.
Highlights
See all activity158Activity
Recent contributions
