Main fundraiser photo

Don't want to die in my car!!!

I am Lisa Burke and my service dog is Bella-Boo.  Today when I went to see my Neurologist, he gave me some news that I didnt want to hear.  I now have 2 new lesions on my brain and 3 more lesions on my spinal cord. He increased my steroids and advised me to not be at home alone or go anyplace alone because fall risk is higher now with the new lesions.  All medications have been increased and with the steroid increase, I am hoping my body will calm down. I sure hope that one day soon the doctors & scientist who study NEUROMYELITIS OPTICA will find a cure or at least a better way to treat it. When I started this campaign, I was having a bad day from my illness-just like I am today. It hurts so bad to breathe and I always worry if this is it. I started this campaign because I dont want to die in my car.
Many of you know my story but some dont:  After 14 years of symptoms of paralysis, 5 back surgeries and many "guessed/probable" diagnosis, I was finally given a correct and definitive diagnosis of NEUROMYELITIS OPTICA aka DEVIC'S DISEASE which has a 5 year prognosis. Because I had already had these symtoms for several years and was past my expiration date, I wanted a 2nd opinion-I am not ready to die yet!!!  I packed up the clothes on my back along with my service dog and left everything else I owned behind. I headed out east with a full laundry basket of medical records and MRI'S heading to both Johns Hopkins Hospital (Baltimore, MD) and Vanderbilt Hospital(Nashville, TN). That was in January 2014 and from that day until just recently, Bella-Boo and myself were homeless-36 full months of sleeping in the car through sweltering heat and ice-cold winters with inches of snow covering my car in the lot of a Walmart store in Kentucky. All of my disability checks each month went to travel expenses, food and an occasional motel along with my gas for the car. $1,000 per month just didnt go far enough to save for an apartment and all that is needed to move in one with deposits and such. I returned out west in June of this year hoping for some kind of normalcy but still couldnt do it on my own and that is when I decided to run this campaign. Two newpapers wrote about my story also, the Daily Breeze and the Beach Reporter. You can also google my name: Lisa Burke, Redondo Beach, CA to find out more about my illness and all of the many works I have done for my community over the many years I lived here. And of course I have 17 years of complete medical records. However, rents have tripled since I was gone so I was forced to look someplace where it was a little more affordable. Las Vegas is where I ended up, and yet I still pay more than 80 percent of my income on housing. It is a struggle just to eat. 
Over the weeks and months you have made such a HUGE difference. Because of you, we have a car that runs great instead of that broken down junk that I kept sinking every penny into. We now have an apartment after 36 months of sleeping in a car, we have a few dishes and towels and I am hopeful to be able to get a used mobility scooter to replace the one that was stolen, along with some furniture and groceries. You guys came through for us and I cannot thank you all enough!!!  I think that is why I love to give my time to the community, because it really does make a difference in the lives of others. You all have helped and as of next Thursday there will be one less person living in our streets. Once I feel better, I plan to pay it forward and help others in this situation. It hasnt been easy, especially as sick as I have been, but we are finally making it and I can now fight this disease from home instead of a car.
 Once again I want to thank everyone who prayed, donated, passed my story around and more. 
One last thing I am desperately in need of is a MOBILITY SCOOTER, FURNITURE & SOME GROCERIES. These things would help tremendously. I will be spending 80 percent of my income on rent, so very little will be left over for my bills let alone extras.  I have a ton of goods in my storage unit in Kentucky but the cost for a Penski truck is $750(with my discounts) and that may take a while to come up with. The scooter can be new or used but it has to be the kind that can be broken down and put into my car as I have to take myself to the doctors and I usually dont have any help so thats the reason it has to break down to put in the car. My other mobility scooter was stolen from my car when I drove back out here and I havnt been able to replace it.  Or if anyone has one they no longer need or could possibly donate for a scooter & groceries, it would mean the world to me. It has been hard getting around without my scooter as my legs are weak due to the lesions on my spinal cord.  Anything else I can buy at garage sales etc. Please consider a small donation. Please.
God Bless you all!!! Thank you to everyone!!!  Love and Hugs from Lisa & Bella-Boo!!!

Organizer

Bella-Boo Berke
Organizer
Redondo Beach, CA

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