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This stem cell transplant is Marcia’s only hope at stopping this disease. If you can’t donate, your thoughts and prayers are very much just as important. God Bless you, and please pray or send your positive thoughts that a healing, protective hand is kept over me. Thank you in advance for everything you do, whether it be monetary or thoughts and prayers.
Family of Marcia Rose
Been a few days since I have updated. I am having some health issues...I start another 3 days of IV steroids tomorrow, not looking forward to it at all..I suppose I should look at it on the brighter side...it does work at bringing the inflammation down when I am having a relapses. I think this is my 4th relapse since coming home from the hospital in February. It's sometimes hard to soak in that my doctor says I have had this for years, but now that this MonSter has reared it's head it is showing no mercy at all. A relapse a month so far...And this 65,000 seems so impossible for me to raise. I have never had a demon that I couldn't stare down; but this one is a whole new experience for me. I pray a lot. I don't understand why a cure is so expensive. I don't understand how I am suppose to raise this...I have worked my butt off making phone call after phone call and I just hit a brick wall. So much work goes into planning events and it has me so exhausted! Am I dreaming to big? I don't know, I just know I want to stop this MS before it takes anymore control of my body...I'm just not so convinced this is whats God plan is.
Today's Update- Hi everyone! The last couple of days I have been extremely busy on the phone, trying to get things together for my first event, a pool tournament. Making phone calls, getting donations, figuring out what day will be best, what kind of tournament it will be. I know on the surface these might seem trivial things, but I am one tired exhausted chick, It's just after 5pm where I'm at and I can hardly hold my eyes open...I'm suppose to pay attention to those cues and take a nap...I get sick of naps, and I am nowhere as far as I hoped to be at this point. But the body is zapped. Maybe a 45 minute poswer nap will help. Not sure of what places I can call now for donations with it being after 5. Tomorrow is a new day! Hopefully more productive as well. I am just really anxious to get my first event narrowed down. I hope everyone out there is having a great day! A side note- if anyone out there has done fundraising events before and has some suggestions on places I can call for door prizes, raffles etc..I am open to them. And once again, if there is anything you can give to my campaign It would be such a blessing to me, and I can not express my gratitude enough! Please share my page, and ask your friends to share my page! Thanks everyone!
Hi evertone! Hope everyone is having a fabulous Wednesday! It has been a gorgeous day in my part of Ohio. Another kind of day where I just soak up my blessings! Even with the things I have been going through, I have been finding it easier and easier to focus on the blessings way to numerous to count!. Today is World Multiple Sclerosis Awareness day. I didn't even know there was such a thing...I guess they have days of the week to recognize everything. On the silly side, I winder is there is an ingrown toenail day? Oh, I'm just being silly now. MS awareness Day is so important and it should be spread world wide every day! The sad part is these days dedicated to teaching and educating about MS are spent teaching the wrong things. It is unfortunate that they are still spreading the word that this chronic disease has no cure. LIE. HSCT, being used worldwide with great success rate at curing this disease. One thing is true about HSCT, there is no guarantee that it will reverse damage already there (but in some cases it does) but in 93% of the patients getting this stem cell transplant it is bring the disease to a complete halt. If you had a 93% chance at hitting the lottery, you would be in line yesterday. I call that a cure. And that is something to be joyous about! Even if you do not have a dime to contribute to my campaign, please get the word out. Share my story...if you know and MS patient there is a very high probability that the have not heard of the HSCT treatment. Tell them to message me. I have so much scientifically proved data on my computer, not from quack doctors...cold hard undeniable truths that have been published in JAMA, clinical trilals .gov, The National Institute of Health. Please just tell them to email me. I will help them understand. The word needs to get out! Sure, this knowledge hurts Big Pharma...but we are talking about the rest of our lives, not profits. And Big Pharma should be ashamed of themselves! With today being Nation World MS Day, if you would like to make a donation to my campaign it would be so much appreciated!
Today has been a pretty good day! I spent last night alone...but it was something I have needed for a while now, so it was a good thing. I cried and prayed a lot. In the middle of it all I realized I was taking on to much, trying to handle my personal inner feelings on my own, not asking for help or crying on someones shoulder because I felt like I would be a burden...I never want to be a burden to others. Since my diagnosis I felt like I was quickly losing control of my identity, my role in life, and more importantly my purpose on this earth. I just let it all go last night. I handed it all over to God. After all, He is the one ultimately in control of everything and I had lost sight of this. After my alone hours with Him I now have this whole new perspective on life.I feel light today...free!
I have spent so many years of my life dedicated to trying to take care of many people...I always seen this as my purpose that God gave me and this has been my life's role for as far back as I can remember. I have spent so many hours trying to figure out why me, why do I have to have this chronic disease? I have tried to be the heart of my family. The place that everyone could comfortably go to, kick their shoes off, put their feet up on the furniture and just be who they are. Let them talk about whatever was on there mind, and do it without judgment. In my own quirky, (sometimes inappropriate language, lol blame my daddy) Irish ways, I did my best to be there always. Even for the ones that have hurt me time and time again, I tried to be there still. Never turning my back. It was what God expected out of me, it was what was right, and it was done out of love, not obligation. Sometimes it backfired, sometimes I made mistakes, sometime I made the situation worse, but my heart was always to make it better, even if I failed. Even with my mistakes I think I have a pretty good batting average. Sometimes when we try to make things better we can strike out. It's just life's lessons.
The thing with MS is it just does not effect your physical ability to do things. Any one that has done the slightest research will know of the various physical disabilities MS can cause. In my case I face the extreme fatigue, memory loss, brain fog, some days I walk good, some days I don't. There is cognitive decline, thank God for spell check! Numbers that I used to be able to quickly add up in my head I now have to use a calculator. These are just a few examples of how MS has effected me. They call it the snow flake disease because every MS patient is different. The embarrassing parts of my MS is in the beginning I had incontinence problems. Now it is the exact opposite. I know that I have a full bladder but it is quite common for me to sit in the restroom trying to release for 5 minutes or so, and even then it's just a small trickle. I spend a large part of my day going to the restroom, and it can be painful at times. Since being released from the hospital at the end of February I have had 3 urinary track infections,,,these can be quite dangerous and even deadly for MS patients, Not the urinary tract infections themselves, but they can lead to a kidney infection if not caught and if the kidney infection is not caught, blood infection and then sepsis. It is the sepsis that can be deadly. I also have pain. Sometimes it feels like bone pain in my right leg, but most of my pain is from having spastic (extremely stiff) muscles almost 24/7 from my neck, right shoulder, down to my right thigh muscle. Amazing that last night, after I turned it all over to God I was to relaxed, so at peace, I had no pain...God took it away, He gave me a much needed break of peace and solitude, Pain free <3 The numbing comes and goes on the right side. Pins and needles from the tips of my fingers to the tips of my toes can occasionally turn in to Knives and Forks being jabbed all over the right side of my body. This doesn't happen a lot but when it does it comes on sudden, without warning and boy is it killer pain! But what many may not know of is how it effects your emotions. The lesions that I have on my brain make me a basket case. I cry, I isolate myself, I don't know how to answer the question "how are you doing today?" Welling up with tears in my eyes. Where would I begin? I just turn my head away, to hide those tears fighting to come out and say "I'm doing okay" I was never like this. I always felt like I was the strong one. There for anyone who needed their tears dried. It's what I did, it was my purpose, it was my role. Well after last night, after handing it all over to God...who had been standing there the entire time waiting on me...I freely and gratefully gave it all to Him. There was a peace that came over me, a serenity that I cannot put into words. I slept better last night then I have since my diagnosis. Today I woke up with a smile on my face, I guess you can say a pep in my step, lol. God is so good and it was I who lost site of this.
I am still doubled blessed with this ginormous crazy family that loves me and needs me. I recognize now that I am going through a change. God has awesome things in store for me, I don't know what they are, but they will be blessings for sure. Me, the caretaker...asking for help, needing a shoulder to cry on, feeling weak at times, emotionally weak all the time...this is all new to me. But it is all part of His bigger plan. My purpose in this life is changing...not sure what it is yet, but He will reveal it in His time, I just need to be patient. It is ironic to me that I am 48 years old, told by my doctor that the way my MRI's looked, I have had this MS for years. Why did it choose now, after all of these years to reveal it's ugly head? I suspect because I was busy doing what God wanted me to do, I was taking care of people...My parents, my kids, my 6 grandchildren that I took in without a second thought 13 years ago and I wouldn't change a thing...I would still do it all over again, the list goes on and on. I have no regret doing it, it was what I was suppose to do and I did it out of love. All of these children turned out to be another huge blessing that God gifted to me. And now God is teaching me how to be more humble and He is preparing me for my future. Now that my list of loved ones that no longer need my care because they have grown up, started their own lives, on very successful paths. I am so proud of them!, Or as in the case of my parents, I worried and fretted over them. Did everything I could do for them in the winter of their life, they have passed on. My job as a loving caretaker has not come to a complete end. I still have 3 grandchildren at home. But birthdays come and go quicker then I can blink my eyes. So soon enough they will be leaving the nest, as it is suppose to be, following their dreams. Hopefully taking many of the lessons I have taught them along the way. All of them are my life, the older children, the younger children, the 17 grandchildren I have been blessed with and the grandchildren yet to be, they will remain so, and no matter their age I will still be here. I know they love me as well, and I know they need me, but it is a different kind of need. They are all mostly doing so well and I think it is just perfectly fine to say I have done a fabulous job, when at times over the years I wasn't sure I was doing it right.
So now God has started to prepare me for my new purpose. The second half of my life. Will I get this treatment? It is so much money to raise, I don't know. As bad as I want to stop the progression of my MS with the stem cell transplant, this is also in Gods hands.But He has created us as intelligent people, and he has given us the ability to fight back. All of the Doctors out there are merely his tools. He works through their knowledge and their hands. 50% of all relapsing remitting MS patients eventually end up in a wheel chair permanently. I don't want to end up in a wheelchair. I don't want my disability to progress and get worse. I want to stop it, dead in it's tracks! I want to be able to play with my grandchildren,, go for long walks on the beach, all of the sudden, even though I never had the desire before, I want to climb a mountain and from the top I want to scream to this chronic disease, with God as my armor and loving people as my supporters, I have beat you MS; you can no longer attack that which God has given me! I don't know what my future holds. But I have faith that this is a new beginning in my life. Having this disease is hard to adjust to, just like change is hard to adjust. And while MS is a dreadful chronic disease, I believe having it, dealing with it, and fighting to erradicate is are my first steps to the beginning of my new life.
I know this is another long post, I'm good for them for sure! And I didn't mean for it to sound preachy...but at the same time I did. God is awesome and made his presence known to me last night. This spiritual experience overwhelmed me and I need to share. I know that no matter what happens I will be okay because I am in His hands. I will fight for the cure, He expects us to do things like that. God does not drop things in our lap. Some things we have to fight and struggle for. One of the hardest things in the world for me is to ask for your help. But this is what I am doing. It is just so humbling for me. The money I need to raise is so much, it seems impossible. But with my faith in my side, I will not give up until I reach my goal. I am determined to not let MS win and take another part of me when there is a cure out there. Any tiny bit you can donate brings me closer to my goal and is so much appreciated. Please, If you can give anything do so. I also understand there are some people out there that are dealing with bigger issues then mine. Financial issues, ect...to pray for me is free and Gods ears are always listening. And it will only take you a couple seconds to share this page and my story. You never know who might see it. Of course there is always the possibilities that one of your friends could donate. But even larger then that your friend could know a friend with autoimmune disease and this person may not know there is a cure out there for them. Seeing this could be their blessing. If anyone see's this that has an autoimmune disease that would like to know more about this stem cell transplant (with over a 90% success rate) please feel free to message me. To those that give, pray, and share, thank you is not enough to express my gratitude.
Here is a video showing everyone the Clinica Ruiz, where I will be having my treatment done. I thought it was important to share these few videos because there are so many people that are unaware and have never heard of this treatment option before. While my main goal of this fundraising platform is to raise money for my own treatment I also want to raise awareness of HSCT for other people suffering from an autoimmune disease. There is hope out there for all of us! As I am just getting my campaign started, future updates will be about planned events, hopefully lots of photos of the events, where I am at, how I am doing. My goal is to keep everyone constantly updated on my progress, good days and bad days (praying for mostly good, MS can be so unpredictable)
Here is a story giving you some background on Dr. Richard Burt, the man behind the HSCT medical breakthrough being used to treat autoimmune diseases,. a procedure that is becoming more and more widely used in countries all over the world. Please know, this is not a new treatment. HSCT has been being used to treat leukemia and other forms of cancer since the 1950's It is now in it's third and final clinical trial stage here in the United States with extremely promising results, at approximately 93% success rate when used on people with relapsing remitting MS. After passing all of the FDA guidelines it is sure to be approved as standard form of treatment for RRMS...but that time will not be until around 2022, which I feel is not soon enough for me. The success rate drops drastically once a patient enters the later stages of Multiple Sclerosis. This is why I feel such an urgency to get this treatment done now, in Mexico. Because Multiple Sclerosis is such a progressive disease, by the year 2022 it may be to late for HSCT to have any positive benefits for me. While my plans are to go to Mexico, it is because of Dr. Burt that so many people all over the world with an autoimmune disease have been given hope and promise for a much brighter future!
Some more information about the huge success of HSCT....Education is so important. There are a ton of people that suffer from Autoimmune disease and have no clue this type of treatment is available. Please share my page, so that others may learn there only choice is not what the pharmaceutical companies it selling them This stem cell treatment is being used Successfully to treat so much more the MS. And just a little fyi...my disease modifying drugs are 7000.00 a month! My treatment in Mexico is 54500.00 plus travel and food. Here in the US Dr. Burts treatment is around 150,000.00. Seems so expensive...until you add up the lifetime cost of your daily prescription. Please share my page...if not my page, then some of the info and video's The key to getting this accepted as mainstream treatment is through education.
A video that is very informative on HSCT...so sad what Australia did.
Thank you so much Kimberly for you kind donation. You are so much appreciated <3 sending much love to you
Marcia Rose
You are so very loved ,hang in there Marcia rose. I'm always thinking of you.
Kimberly McDonald
Make checks payable to:
Help Hope Live
Note in memo:
In honor of Marcia Rose
Mail to:
Help Hope Live
2 Radnor Corporate Center
Suite 100
100 Matsonford Road
Radnor, PA 19087
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