LOONIES OF LOVE FOR LANE & FAMILY
Donation protected
Hi there my name is Samantha Martin, a few of my friends and I are setting up this "gofundme" page for a very dear friend of ours and his family. Lane is one of the strongest people we know and he and his family have been through so much lately and need a little help.
We hope by setting this page up that we can give them at least some of the help they really need and deserve. Below is the most recent update on Lane's story from Lane himself:
February 20, 2016, was the first night I slept in my own bed since November 17, 2015. Sunday I returned to sleep in my hospital bed at the Glenrose Rehabilitation Hospital. This is the third hospital I have been in since I was taken by ambulance to emergency on November 18, 2015. I will hopefully return home for good very soon, although I will have extensive outpatient therapy for some time to come.
This has been a very difficult time for Moyra Kali Lang, me (and Sophie) - personally, emotionally, physically, and financially. At this time we have more questions than answers. While I had been living the past 2 years with the diagnosis of MS, that has now changed. I have now been diagnosed with Neuromyelitis Optica. This is an auto-immune disease that predominately attacks the spinal cord and the optic nerves. It is somewhat similar to MS, but there’s a different mechanism that causes it, and it results in very different kinds of disability. I am very fortunate to have a neurologist that has never quit looking for answers, or simply accepted that it was MS even though it was not responding to treatment - in fact, it was getting worse. Thanks, also, to the fantastic healthcare teams at the University of Alberta Neurosurgery unit and the Glenrose Rehabilitation Hospital Spinal Cord Injury and General Neurology unit. When I was admitted to the U of A (November 27, 2015) I was quadriplegic, unable to lift my head or move any of my limbs purposefully. When I arrived at the Glenrose (December 3, 2015), I was able to use my left arm and hand some, but was not able to roll in bed, open my right hand at all, move my legs, or sit up. I am, finally, making some great progress. I am now able to move all of my limbs (some better than others), and I can get in and out of bed independently. I am gaining more independence by relying on a power assisted manual wheelchair and many other aids and supports. I am photosensitive, and wear sunglasses and a hat when I am in places with florescent lights, or any strong direct lighting; but otherwise my vision has recovered very well.
While it is not my habit to post this kind of personal information on Facebook, I feel compelled to do so in this instance for a number of reasons. First, I want people to hear about this devastating and rare disease. One source suggests that only 1000 Canadians have Neuromyelitis Optica; another suggests that the worldwide prevalence of the disease is 1 in 100,000. There is no known cause and no known cure. Most research papers on it suggest that it is extremely disabling very quickly, with most people being completely reliant on a wheelchair or blind in one or both eyes within 5 years of diagnosis. I became a permanent chair user less than 3 years after they found the first lesion. More recently there have been some good results from research into Rituximab; however much of this research is funded by the drug company that makes Rituximab, and all studies have very small sample sizes, because of how rare the disease is. These make the results of these studies somewhat unreliable, and not a good predictor of how anyone will respond to Rituximab infusions.
What we do know is that there have been many people who have been very kind in providing assistance in one way or another. Thanks to those people – everything you have done has been very helpful. What I also know is that there is still a very long road ahead, and we will continue to need the assistance of others for many things. This is another reason I am posting this. My illness has been a huge drain on all of us, and it will continue to be. If you can help take some of the load off, it would be very much appreciated. Unfortunately I have not only lost my income, the expenses are piling up at an alarming rate. While I have been fortunate to receive assistance from Alberta Aids to Daily Living, Spinal Cord Injury Alberta, Disability Related Employment Supports and close family, this has not been sufficient to cover the enormous expenses I have already encountered, not to mention those that are still to come. By enormous, I mean costs in the tens of thousands of dollars already. Thanks for your help and support.
It took Lane a lot of courage to reveal the details above. Please help us in helping Lane and his family through this difficult time. Thank you so much.
Sam
We hope by setting this page up that we can give them at least some of the help they really need and deserve. Below is the most recent update on Lane's story from Lane himself:
February 20, 2016, was the first night I slept in my own bed since November 17, 2015. Sunday I returned to sleep in my hospital bed at the Glenrose Rehabilitation Hospital. This is the third hospital I have been in since I was taken by ambulance to emergency on November 18, 2015. I will hopefully return home for good very soon, although I will have extensive outpatient therapy for some time to come.
This has been a very difficult time for Moyra Kali Lang, me (and Sophie) - personally, emotionally, physically, and financially. At this time we have more questions than answers. While I had been living the past 2 years with the diagnosis of MS, that has now changed. I have now been diagnosed with Neuromyelitis Optica. This is an auto-immune disease that predominately attacks the spinal cord and the optic nerves. It is somewhat similar to MS, but there’s a different mechanism that causes it, and it results in very different kinds of disability. I am very fortunate to have a neurologist that has never quit looking for answers, or simply accepted that it was MS even though it was not responding to treatment - in fact, it was getting worse. Thanks, also, to the fantastic healthcare teams at the University of Alberta Neurosurgery unit and the Glenrose Rehabilitation Hospital Spinal Cord Injury and General Neurology unit. When I was admitted to the U of A (November 27, 2015) I was quadriplegic, unable to lift my head or move any of my limbs purposefully. When I arrived at the Glenrose (December 3, 2015), I was able to use my left arm and hand some, but was not able to roll in bed, open my right hand at all, move my legs, or sit up. I am, finally, making some great progress. I am now able to move all of my limbs (some better than others), and I can get in and out of bed independently. I am gaining more independence by relying on a power assisted manual wheelchair and many other aids and supports. I am photosensitive, and wear sunglasses and a hat when I am in places with florescent lights, or any strong direct lighting; but otherwise my vision has recovered very well.
While it is not my habit to post this kind of personal information on Facebook, I feel compelled to do so in this instance for a number of reasons. First, I want people to hear about this devastating and rare disease. One source suggests that only 1000 Canadians have Neuromyelitis Optica; another suggests that the worldwide prevalence of the disease is 1 in 100,000. There is no known cause and no known cure. Most research papers on it suggest that it is extremely disabling very quickly, with most people being completely reliant on a wheelchair or blind in one or both eyes within 5 years of diagnosis. I became a permanent chair user less than 3 years after they found the first lesion. More recently there have been some good results from research into Rituximab; however much of this research is funded by the drug company that makes Rituximab, and all studies have very small sample sizes, because of how rare the disease is. These make the results of these studies somewhat unreliable, and not a good predictor of how anyone will respond to Rituximab infusions.
What we do know is that there have been many people who have been very kind in providing assistance in one way or another. Thanks to those people – everything you have done has been very helpful. What I also know is that there is still a very long road ahead, and we will continue to need the assistance of others for many things. This is another reason I am posting this. My illness has been a huge drain on all of us, and it will continue to be. If you can help take some of the load off, it would be very much appreciated. Unfortunately I have not only lost my income, the expenses are piling up at an alarming rate. While I have been fortunate to receive assistance from Alberta Aids to Daily Living, Spinal Cord Injury Alberta, Disability Related Employment Supports and close family, this has not been sufficient to cover the enormous expenses I have already encountered, not to mention those that are still to come. By enormous, I mean costs in the tens of thousands of dollars already. Thanks for your help and support.
It took Lane a lot of courage to reveal the details above. Please help us in helping Lane and his family through this difficult time. Thank you so much.
Sam
Organizer
Samantha Martin
Organizer
Edmonton, AB