- C
Once upon a time, there was a beautiful, stubborn, and strong willed girl, named Josie. One day, when she was just 14-years old, something happened that changed her life forever. It should have been nothing really. She dislocated her left knee. People do that all the time, right? No big deal? Except it was. Because that knee dislocation turned into a horrible pain disease, by the name of Complex Regional Pain Syndrome (CRPS.)
Since that day, March 4, 2015, Miss Josie has never been without pain. It’s not just an annoying pain. Not a “stubbed my toe,” “burned my finger,” “pulled a muscle” pain that is simply an inconvenience and frustration, that can be soon forgotten. It’s a burning, searing, pulsing, agonizing, intense pain that never ever goes away. But, pain is not the only thing that CRPS does. It also causes the affected limb to seize and lock, to change temperatures, to swell for no reason, to change a myriad of colors, to spasm uncontrollably, and just generally do whatever it wants whenever it wants. The pain is so relentless and so unmanageable that CRPS has earned the nickname, “the suicide disease.”
In January of 2016, Josie was able to go to the Mayo Clinic Pediatric Pain Rehab Clinic in Rochester, MN. This clinic did many wonderful and positive things for Josie. It got Josie walking again. It taught her pain management concepts to utilize in her everyday life so that she could continue to live the life she wanted, in spite of the pain. It taught her that if she just employed these concepts daily and without fail, that she could be in control and not let the pain win. And since that time, she has followed these concepts. She has utilized all the “tools” in her “toolbox” and very few people realized what she still daily coped with and fought against.
Josie has lived her life and fought for her dreams and goals, in spite of the pain. She truly believed in the Mayo ideal that if she did what she was supposed to and just kept going, that she could overcome the effects of this dreadful disease. But, by spring of 2018, CRPS began to gain the the upper hand yet again. The cold snap in December of 2018, profoundly affected Josie and caused her to go into a flare where she could barely function. Her knee began to lose mobility, despite her daily stretching and exercise. Early 2019, she began to struggle to walk again. Josie has fought and fought and fought. She has employed every concept, exercise, and option she can to be in control and live her life in spite of the pain and she has lost repeatedly against this horrible disease.
There is no true cure for CRPS. There are few treatments and most do not work at all. Ketamine infusions are the treatment of choice in the USA and that is not an option for Josie. Her passions and dreams and goals are too big to be consistently drugged.
Helpless does not begin to describe how a parent feels watching their child struggle day after day after day, knowing that there is nothing that can be done. Except prayer. And so we prayed. I remember this past winter, telling God that I would go to the ends of the earth and spend all I had, if it could just give Josie some relief. I have pled with God to give me her pain. She has done everything “right” and yet this disease is winning.
And then, without even looking for it, God sent an answer through a new acquaintance. Through a most unlikely connection, but God and His mysterious ways. We found out about a treatment. A treatment that is working for nearly everyone that has had it. Some have experienced partial to nearly complete relief. Many have gained a total remission of their CRPS symptoms. Not “just the pain,” but all the symptoms. All of them! The amount of benefit varies by the case and the sooner the treatment is given to the time of CRPS beginning, the better the outcome. However, many that have had this disease even longer than Josie, have experienced huge benefits!
This treatment is in Italy. And yes, I laughed, just as you may be right now. It sounded crazy. Italy? Really? Yes, Italy. It is the most promising treatment in the entire world for CRPS and time is of the essence! We have personally talked to many that have gone and received the treatment and all have said to get Josie there as fast as we can.
So I did what any mother would do. I contacted Italy. And they have given Josie a 50%-80% chance of full remission. The fear and hope is so tangled and intense. What if it doesn’t work? What if it does? What could this mean for Josie? This could change everything.
Today, Josie is still fighting. Still strong willed. Still stubborn to a fault. But, her knee can no longer bend at all. Walking is a struggle. Her entire body suffers. Hip, back, and ankle pain. Sleepless nights. Spasming and heat and swelling that happens regardless of what she does. She gets up every morning. She goes to work trimming and shoeing horses. She doesn’t talk about her pain or the struggles she faces with the simplest of tasks. So many of you never knew. But, now you do. Since March 4, 2015, she has lived with constant and relentless pain and symptoms that none of us can ever begin to imagine. And the flares this year, have come in never-ending waves, despite her carrying on and fighting with everything she has.
So now we’ve reached the part of the story, where the ending is unknown. Now, we've reached the part of the story, where we ask you to become a part of it. We need to get to Italy, as quickly as possible. And we are going. We are trusting God to show up. To help us get the needed funds. To give us a miracle of remission. It’s only because of Him that we even found out about this treatment.
But, we need your help. Our goal is $25,000. Can you help us get there? Josie has impacted so many of your lives. She is a remarkable young lady that deserves a chance at a life that the rest of us take for granted. Any amount will help. Any gift will most certainly be blessed. Will you be the hands and feet of Jesus? He hated suffering. Can you hate it with us? Can you be a part of this story? The one that, God willing, will end with a Josie that gave CRPS “the Boot.” All glory to God and may it be so.
Since that day, March 4, 2015, Miss Josie has never been without pain. It’s not just an annoying pain. Not a “stubbed my toe,” “burned my finger,” “pulled a muscle” pain that is simply an inconvenience and frustration, that can be soon forgotten. It’s a burning, searing, pulsing, agonizing, intense pain that never ever goes away. But, pain is not the only thing that CRPS does. It also causes the affected limb to seize and lock, to change temperatures, to swell for no reason, to change a myriad of colors, to spasm uncontrollably, and just generally do whatever it wants whenever it wants. The pain is so relentless and so unmanageable that CRPS has earned the nickname, “the suicide disease.”
In January of 2016, Josie was able to go to the Mayo Clinic Pediatric Pain Rehab Clinic in Rochester, MN. This clinic did many wonderful and positive things for Josie. It got Josie walking again. It taught her pain management concepts to utilize in her everyday life so that she could continue to live the life she wanted, in spite of the pain. It taught her that if she just employed these concepts daily and without fail, that she could be in control and not let the pain win. And since that time, she has followed these concepts. She has utilized all the “tools” in her “toolbox” and very few people realized what she still daily coped with and fought against.
Josie has lived her life and fought for her dreams and goals, in spite of the pain. She truly believed in the Mayo ideal that if she did what she was supposed to and just kept going, that she could overcome the effects of this dreadful disease. But, by spring of 2018, CRPS began to gain the the upper hand yet again. The cold snap in December of 2018, profoundly affected Josie and caused her to go into a flare where she could barely function. Her knee began to lose mobility, despite her daily stretching and exercise. Early 2019, she began to struggle to walk again. Josie has fought and fought and fought. She has employed every concept, exercise, and option she can to be in control and live her life in spite of the pain and she has lost repeatedly against this horrible disease.
There is no true cure for CRPS. There are few treatments and most do not work at all. Ketamine infusions are the treatment of choice in the USA and that is not an option for Josie. Her passions and dreams and goals are too big to be consistently drugged.
Helpless does not begin to describe how a parent feels watching their child struggle day after day after day, knowing that there is nothing that can be done. Except prayer. And so we prayed. I remember this past winter, telling God that I would go to the ends of the earth and spend all I had, if it could just give Josie some relief. I have pled with God to give me her pain. She has done everything “right” and yet this disease is winning.
And then, without even looking for it, God sent an answer through a new acquaintance. Through a most unlikely connection, but God and His mysterious ways. We found out about a treatment. A treatment that is working for nearly everyone that has had it. Some have experienced partial to nearly complete relief. Many have gained a total remission of their CRPS symptoms. Not “just the pain,” but all the symptoms. All of them! The amount of benefit varies by the case and the sooner the treatment is given to the time of CRPS beginning, the better the outcome. However, many that have had this disease even longer than Josie, have experienced huge benefits!
This treatment is in Italy. And yes, I laughed, just as you may be right now. It sounded crazy. Italy? Really? Yes, Italy. It is the most promising treatment in the entire world for CRPS and time is of the essence! We have personally talked to many that have gone and received the treatment and all have said to get Josie there as fast as we can.
So I did what any mother would do. I contacted Italy. And they have given Josie a 50%-80% chance of full remission. The fear and hope is so tangled and intense. What if it doesn’t work? What if it does? What could this mean for Josie? This could change everything.
Today, Josie is still fighting. Still strong willed. Still stubborn to a fault. But, her knee can no longer bend at all. Walking is a struggle. Her entire body suffers. Hip, back, and ankle pain. Sleepless nights. Spasming and heat and swelling that happens regardless of what she does. She gets up every morning. She goes to work trimming and shoeing horses. She doesn’t talk about her pain or the struggles she faces with the simplest of tasks. So many of you never knew. But, now you do. Since March 4, 2015, she has lived with constant and relentless pain and symptoms that none of us can ever begin to imagine. And the flares this year, have come in never-ending waves, despite her carrying on and fighting with everything she has.
So now we’ve reached the part of the story, where the ending is unknown. Now, we've reached the part of the story, where we ask you to become a part of it. We need to get to Italy, as quickly as possible. And we are going. We are trusting God to show up. To help us get the needed funds. To give us a miracle of remission. It’s only because of Him that we even found out about this treatment.
But, we need your help. Our goal is $25,000. Can you help us get there? Josie has impacted so many of your lives. She is a remarkable young lady that deserves a chance at a life that the rest of us take for granted. Any amount will help. Any gift will most certainly be blessed. Will you be the hands and feet of Jesus? He hated suffering. Can you hate it with us? Can you be a part of this story? The one that, God willing, will end with a Josie that gave CRPS “the Boot.” All glory to God and may it be so.