Good morning to our generous donors.. Reflecting back on 2013, I'm astounded by all that has transpired for us and reading through your list of names below, I'm once again blown away by your love and generosity. As long as I'm alive, I will never forget how you pulled together and helped us get through the toughest time of our lives. Today.. I'm in need of your postal mailing address (snail mail). Many of you donated anonymously and some of you are friends of friends, whom I have yet to meet. That means that I cannot reach out to you by any other means than this. Please email your postal address to me directly at firstname.lastname@example.org With much love and gratitude.. L&J. xoxo.
UPDATE: Good Saturday afternoon all. Thought I'd post a bit of an update with respect to Jazir's progress. A few weekends ago we were in very dire straights. Jazir had lost almost ALL of his language, he asked the same couple of questions hundreds of times per day, had to have his clothes changed multiple times per day because they were saturated from him obsessively chewing upon them and he was beginning to lose vital functions as well. His prognosis was heading in the direction of the worst possible outcome; if we didn't turn it around, he could die as his brain function continued to deteriorate and more vital function was lost. As you can imagine, we were beside ourselves with grief.
I am very happy to report that this past Thursday's EEG showed that much of the near-constant seizure activity in his brain has subsided as a result of the change in medication and we are getting much closer to seeing a clear EEG. Evidence of this is showing up in him as his language and comprehension return. He is speaking in full sentences again, able to carry on conversations and recalling events both recent and past. He is putting information back into context, requesting libraries of music and stories that he once loved and his delightful personality is returning. He even looks like himself again!
Our next EEG will be an overnight audio/video EEG at Sick Kids and we hope by then to see a clear image and normal brain activity. Now that we have a baseline again from which to begin, we will implement the program that I was taught in Philly. We will need to re-teach his brain how to see, sort, organize, recognize and recall the details of his environment and the people in it. We will re-teach him his alphabet, numbers, colours, shapes, etc., as we would an infant starting from scratch. Given his innate intelligence, I suspect there will be aspects of this learning process that will frustrate him, but I believe with diligence we will be able to achieve results that allow him to function at his age level and possibly beyond.
I look forward to posting more and better news as we continue down this path toward total healing.
Thank you for your continued love and support.
Yay.. some positive news to share! After just a few days on his new medication, Jazir's cognition seems to be returning. He is not back to his whole self yet and I expect that will still take quite some time.. months or even years. However, from mid-last week up to and including yesterday, we experienced the absolute worst few days of his life. I'll spare you the details; suffice it to say, it was heartbreaking and terrifying. We now seem to be moving in a positive direction again and all of us are breathing a little easier today. I hope (and fully intend!) to continue to post more good news in the days, weeks and months ahead as we progress. :)
UPDATE: This week provided some new developments. In addition to previous diagnoses, another has been added. Jazir's Neurologist has diagnosed him with Landau Kleffner Syndrome. This refers to a progressive epileptic encephalopathy that can ultimately lead to a complete loss of language and severe Autism.
We have begun a new anti-convulsant medicine (Clobazam) and may have to add one or two more as we go (most likely a steroid), depending upon whether or not the Clobazam is effective, how effective it is or is not and how quickly, etc. The work that was done in Philadelphia is still completely relevant and we will continue to pursue the intensive home therapy program that was developed out of my visit there.
Jazir and I will return to Philly together in a few months as planned so that the staff there may continue to add their professional input and extensive experience to his ongoing and seemingly ever-changing case.
Next Thursday he will undergo another EEG (the most recent of many) to determine the extent and intensity of electrical activity still present in his brain.
He has lost a great deal of his language and vocabulary in recent weeks and tends to ask the same few questions hundreds of times per day. Still, we hope this course of action and treatment will prove effective.
Every one of us responsible for his care and well-being refuses to be anything but optimistic about future outcomes. We remain grateful for your care, concern and community support. Your donations have assisted us immensely and are gratefully and graciously appreciated. We still have a long, long journey ahead of us before we return him to 100% wellness.
Love and blessings to each and every one of you..
And so begins Phase Two of our healing journey. We're home now, implementing the intensive training program that was developed by me and the staff of the Institutes for the Achievement of Human Potential in Philadelphia. In a few months, Jazir and I will return for our next assessment and intermediate program development. Associate costs are estimated at $7,000. I have increased the goal amount on this page to reflect that requirement. We remain most humbly grateful for your love, compassion, encouragement and support. L&J. xoxo.
How can I possibly thank you all for the love and support you have extended to Jazir? We have exceeded our goal for this first leg of fundraising that will cover our first journey to Philadelphia. There will be subsequent visits required to get him all the way through to total healing, so any funds that are donated or remain after this initial effort will be held over for our future flights, tuition, accommodations, meals, devices and learning materials. My heart is absolutely overflowing with gratitude. One day Jazir will meet every single one of you and have the opportunity to thank you face-to-face for assisting him in his journey back to thrival. ♥
Sorry about the creepy Halloween photo that was displaying earlier today. This page is linked to my FB account and it automatically updated it for some strange reason.. possessed clown took control? ;) I think we've returned to the land of the living now!
I cannot aptly express the extent of my gratitude for the support that has poured in for Jazir. I feel so blessed to be surrounded by such incredibly caring men and women. From the bottom of my heart, thank you.
This is Phase 1 in what will be a long journey back from confusion to clarity. Everything you have done for us to help us get started will be remembered forever.
NOTE: The PayPal account associated with this page is in my mother (Jazir's Nanny), Margaret Barton's name.
My name is Lara Marjerrison. I live in Toronto, Ontario, CANADA. I am the mother of a darling seven year old boy, named Jazir, who suffered a TMI (traumatic brain injury) at age 2.5 years. Initially he presented with Epilepsy only, which we have treated and successfully controlled. Recently, however, his revised and more accurate diagnosis of CVI (Cortical Visual Impairment) and Visual Agnosia has continued to mystify his Neurologist in that it continues to worsen and debilitate him further.
My son has regressed to the point that he is now legally blind. His eyes are completely healthy and functional but his brain does not process or recognize what he is looking at. He has lost all ability to see faces, including mine and his dads and relies wholly on the sound of our voices to identify us. He can no longer identify every day objects, has lost his ability to differentiate colours and now struggles to dress himself because he cannot recognize different articles of clothing nor determine what their function is. He is disoriented and gets lost or confused even at the simplest task, such as getting himself from his bedroom to his bathroom. He cannot be out in the world without holding the hand of an adult, it's not safe for him. He doesn't recognize where curbs become roads, where edges drop off. We must be on alert for his safety at all times. He is now beginning to struggle to eat properly. His condition is deteriorating rapidly and he is losing more and more of his independence. Every day offers a new challenge as we strive to adapt. He presents much like a little boy trapped inside an Alzheimer's riddled mind. He becomes more reclusive, frustrated and anxious as time passes.
His MRI is normal. He is intelligent, compassionate, loving, affectionate and musically talented. He lights up a room when he enters and everyone that meets him remarks, "There is something about that boy.. " Watching pieces of him slip away is torturous. His doctor believes that, based upon his normal MRI and other demonstrated abilities, we can HEAL this injury. We just need the right people and procedures to help.
There is an Institute in the US that can do just that. It's called the Institutes for Achievement in Human Potential. I need to attend their programs to learn how to heal his injury, detox him from his meds and get him thriving again.. to return him to himself and to us. Two years ago I had to give up my job in order to give Jazir the proper care and attention he needs and that his condition demands. We survive on next-to-no income and live very frugally.
I need your help. I require travel, tuition and living expenses for the programs that I must attend at www.iahp.org to help my son. This is a critical next step in his healing process and the time to act is now. The program begins December 3rd, 2012. Please help me to get there.
I remain most humbly grateful for your compassion and consideration.
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