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As most of you know I have had MS for most of my life. I was diagnosed when I was 23. I have been very blessed to not have many visible symptoms for most of my Journey. That is until about 5 years ago. In the past 5 years my walking has severely deteriorated. I can now only walk about 100 yards before I need to sit down or else I will fall down. I also use a cane now to keep my balance and provide support. MS also has invisible symptoms like extreme fatigue, foggy thinking, vision deterioration, bladder incontinence, and loss of muscle strength. I have or am experiencing all of those symptoms just mentioned.
MS can continue to deteriorate your body until you are totally paralyzed or even cause death. Doctors cannot predict how long your symptoms will stay mild nor how bad you will get, or how fast. I tell you that to lead into why I need help.
There is a treatment that has given me a tremendous amount of hope. It is called HSCT (Hematopoietic Stem Cell Transplantation). It uses YOUR OWN STEM CELLS and does not utilize fetus stem cells at all. HSCT has been in trial in Chicago for 10+ years and is showing fantastic results! In 70-80% of patients it is stopping MS progression in its tracks. Some patients even report regaining some of the function they lost. I urge you to research it online but make sure it is HSCT and not just stem cell infusion without chemo.
Here is the part where I need help. They offer this treatment in:
-Chicago (if accepted in trial) for $125,000+ travel and out of work for 45 days.
-Mexico is $55,000 + travel expenses and out of work for 45 days.
-Russia is $45,000 + travel expenses and out of work for 45 days.
I am figuring $70,000 to cover all expenses and there will be infusions and follow up appointments after the procedure that is not covered by insurance. Also, Ronald (my husband and caregiver) will be out of work for 30 days to travel with me to get the treatment.
Americans tend to think healthcare in Mexico or Russia is inferior, but I have researched it and I can assure you they are not. These hospitals are top notch!
Obviously very few people can afford to be out of work for 45 days plus the thousands of dollars in expenses incurred to have it done.
Not having this treatment is not an option. If I don’t go through with it I may not be able to walk at all in the future, I may not be able to hold my grandchildren for fear of dropping them, I may not be able to work, I may not even be able to get out of bed………….That is not the life I want to live, that is not a chance I want to take!
Our target date to reach our goal is October 1, 2016. This is because we anticipate this to be around the time of the procedure. I am currently on the waiting list in Mexico and Russia, and they will notify me several months in advance before my date. Also, if there are cancellations,I could be moved up on the list and have the treatment earlier than expected.
We will be having multiple fundraising events to work to raise money as well. These events will be updated in a blog that I will be updating from time to time. So I ask you, if you can share my page, talk to your family and friends, and donate if possible. Even a few dollars a week or so will help………
Thank you from the bottom of my heart !!
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Amanda has chosen to fundraise with HelpHOPELive in part because HelpHOPELive assures fiscal accountability of funds raised and tax deductibility for donors. Donors can be sure that funds donated will be used only to pay or reimburse medically-related expenses. To make a tax-deductible donation to this fundraising campaign, click on the Donate Now button.
For more information, please contact HelpHOPELive at 800.642.8399.
Thank you for your support!
Thank you so much to everyone that participated in the online book auction! Your generous bids gets me that much closer to my goal and to stopping the progression of my MS!!!! Your support means so much to me and my family!
I am so happy to announce that I have a treatment date in Puebla, Mexico for December 5!!!! Thank you to everyone for all of your prayers and support! God has blessed me with some amazing people in my life! I love each and every one of you, and I could not do this with out you!!!
Very Inspirational!
We wanted to share pre-procedure videos so people can see why Amanda is seeking treatment and hopefully some awesome comparison videos after the treatment is done. Keep Amanda Walking!
Thank you for those that have left me a message on my guest book. It is so heart warming and encouraging. If you have not, feel free to leave me a note :)
I am a BFF with your Aunt, Judy Wilson. My heart goes out to you. I have MS in my family, from my paternal grandmother and her sibliings, to my father and brother-all diagnosed with MS. I know the struggles they had; hope you get some relief and great outcome!
Sue Cox
Praying for you.i hope you can get the help you need.u are an inspiration u show u can still push fwd.no matter what and with ur video maybe it will help others who have MS that they can still push fwd.as well.and your coach was awesome.god bless and keep everyone posted.praying for you.
Tina coker
No matter the miles that separate us I will always hold our friendship close in my heart. Praying for a miracle and we know How Great Our God Is. Love you.
Allison Bragg
Praying for you!
Tanya Bozeman Grimsley
As a person currently living with MS I know how much the seemingly small task can be difficult. Just sitting outside at your child soccer game can put you out for the rest of the day or daily task of keeping the house clean are too much to handle. Not to mention the cost of doctors visits, medicine, and traveling out of town to see the best MS doctors! I truly do understand how you feel and will be thinking of you and praying for you! I wish you the best and pray for a speedy recover!!
Lydia DuPree
Ronald and Amanda,
I remember last year when I saw you struggle to go to a walk, I said to you, "If I had a magic wand, I would wave it and your MS would be cured". Oh how I wish that could be possible. I want you to know that I am praying for you. And, please, let me know if there is anything you need help with. We are right next door.
Kim and Dave Evans
Amanda, your story absolutely breaks my heart. Please know, that as one of my favorite all time little playmates, I love you and I'm keeping you in my warmest thoughts and prayers.
Lisa Hammons
Hope all goes great! Be strong and all the best wishes to you!!
GF
I wish you all the best. Good luck!
Amy Pang
Amanda,
Your story breaks my heart. Please know that you are in the center of my prayers. I want this bar to fill so quickly that it overflows before your time of surgery. I am asking God to overwhelm with the acts of generosity that only He can stir in His people. I know that you are His baby girl, and He wants only the best for you. I know that you are in His healing hands, and I will continue to pray for you and your family as your journey continues.
Michelle Smith
Praying for you and your family. This sounds wonderful and I am confident you will receive your goal for this procedure. Also in memory of my friend Sherri who fought the MS battle
Rebecca B
Praying for you! I watched my grandmother go thru this horrible disease and the treatment sounds really promising! Happy to donate, please keep us posted.
Kristi Jones
I will be donating Amanda! So glad there is hope with this procedure.
Dedra Carter
Make checks payable to:
Help Hope Live
Note in memo:
In honor of Amanda Register
Mail to:
Help Hope Live
2 Radnor Corporate Center
Suite 100
100 Matsonford Road
Radnor, PA 19087
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