Burt's Fight against a rare disease
Donation protected
Burt and I have been quietly battling his terrible and very painful disease that ends with paralysis. It is formally known as Chronic Idiopathic Axonal Polyneuropathy. There is No known cure as there is no known cause. It is so very rare, that there is not even studies available to try. As stated by Cleveland Clinic, the number of people with this insidious condition is "statistically insignificant". No studies, No cure and No hope to stop progression that ends your mobility and then your life.
Burt was always very active, enjoying sports, projects around the home, and travel for work and pleasure. Symptoms appeared 2003-2004 with balance issues..Pain became noticeable, as well as, a general weakness when walking. We had always traveled in our work and the everyday challenges of airports became almost too much to handle. So a career change was necessary.
Over the next few years we searched for answers to what was causing these progressive problems. From the beginning insurances were not covering the many costly tests and specialist visits. We were so blessed to have mounted a huge savings through out the years we were in corporate america. Our reserves were quickly being drained by these medical needs and Burt's inability to work because of the pain.
We have disposed of all extra trappings ( Condos, jewelry, etc) and downsized our home twice. Not surprising to me we are happier in our current location than any before. We have wonderful and supportive neighbors who make everyday a pleasant one.
Burt has always been unwilling to pursue disability because he felt he was still viable in the job market.
The pain was becoming intolerable as his condition progressed. Over time, a cocktail of drugs has been built to manage pain, but some of these are narcotics and he chooses not to increase the dosage.The drugs include Oxycodone, Gabapentin, Zoloft and Xanax. Even though this regimen is expensive and not always covered by our insurance, we continue to fight on! He is limited to pool exercise due to balance and weakness.
To remain self-sufficient, he decided to obtain a Real Estate license in 2015. He and I had been licensed in Missouri for over 20 years. He was successful in becoming a Florida Realtor and even obtained his GRI to be better prepared to go all in with his real estate business. He has done a great job establishing himself with Keller Williams. His client base is growing daily.
However, he has progressively weakened to the point where stairs are not possible for him....climbing even one step into a house is like climbing a mountain. He has been blessed with clients who are happy to see him succeed! The referrals would put a smile on your face! I accompany him on listings and showings to lessen his burden. Our Goal is to build the business to a point where he has other agents do the showings and he can just sell.
We have always searched for new studies that may help his condition, which according to Cleveland Clinic is a hybrid "cousin" of MS and ALS. That is how it has been described to us. So, we were Excited to find there is new work being done on MS with a dgree of success in treating Balance and PAIN. We provided Burt's medical history and they accepted him as a candidate for treatment. The issue is they have never done work with stem cells on his condition....SO while it's promising, it is no surprise they have never encountered it. It is kind of a Hail Mary as Burt put it!Treatments are $20,000 and they are not clear on number that may be needed. We would travel across country for the treatments.
If his Balance is returned at all he would start physical therapy in a month or so after the first treatment.
To be Free of the Pain associated with this disease or even have it lessened would be a Blessing!
Just when we wondered how he was going to go on we found this opportunity! Of course Insurance won't touch the medical or travel costs now or in the following months.
We need your help to make this happen. We were always in the giving seat not in the one asking for help. But this can save Burt's life. So I am asking if you all could give just a little and pass his story on to your Friends and Family. For those who can't, please say a prayer for our success in this great undertaking! I know that God's hand is already in the works.
Imagine our Happiness and Excitement after being told for over 20 years there was nothing to even try to help!
Treatments can begin the end of November.
Thanks for caring!
Pam Shaw
Burt was always very active, enjoying sports, projects around the home, and travel for work and pleasure. Symptoms appeared 2003-2004 with balance issues..Pain became noticeable, as well as, a general weakness when walking. We had always traveled in our work and the everyday challenges of airports became almost too much to handle. So a career change was necessary.
Over the next few years we searched for answers to what was causing these progressive problems. From the beginning insurances were not covering the many costly tests and specialist visits. We were so blessed to have mounted a huge savings through out the years we were in corporate america. Our reserves were quickly being drained by these medical needs and Burt's inability to work because of the pain.
We have disposed of all extra trappings ( Condos, jewelry, etc) and downsized our home twice. Not surprising to me we are happier in our current location than any before. We have wonderful and supportive neighbors who make everyday a pleasant one.
Burt has always been unwilling to pursue disability because he felt he was still viable in the job market.
The pain was becoming intolerable as his condition progressed. Over time, a cocktail of drugs has been built to manage pain, but some of these are narcotics and he chooses not to increase the dosage.The drugs include Oxycodone, Gabapentin, Zoloft and Xanax. Even though this regimen is expensive and not always covered by our insurance, we continue to fight on! He is limited to pool exercise due to balance and weakness.
To remain self-sufficient, he decided to obtain a Real Estate license in 2015. He and I had been licensed in Missouri for over 20 years. He was successful in becoming a Florida Realtor and even obtained his GRI to be better prepared to go all in with his real estate business. He has done a great job establishing himself with Keller Williams. His client base is growing daily.
However, he has progressively weakened to the point where stairs are not possible for him....climbing even one step into a house is like climbing a mountain. He has been blessed with clients who are happy to see him succeed! The referrals would put a smile on your face! I accompany him on listings and showings to lessen his burden. Our Goal is to build the business to a point where he has other agents do the showings and he can just sell.
We have always searched for new studies that may help his condition, which according to Cleveland Clinic is a hybrid "cousin" of MS and ALS. That is how it has been described to us. So, we were Excited to find there is new work being done on MS with a dgree of success in treating Balance and PAIN. We provided Burt's medical history and they accepted him as a candidate for treatment. The issue is they have never done work with stem cells on his condition....SO while it's promising, it is no surprise they have never encountered it. It is kind of a Hail Mary as Burt put it!Treatments are $20,000 and they are not clear on number that may be needed. We would travel across country for the treatments.
If his Balance is returned at all he would start physical therapy in a month or so after the first treatment.
To be Free of the Pain associated with this disease or even have it lessened would be a Blessing!
Just when we wondered how he was going to go on we found this opportunity! Of course Insurance won't touch the medical or travel costs now or in the following months.
We need your help to make this happen. We were always in the giving seat not in the one asking for help. But this can save Burt's life. So I am asking if you all could give just a little and pass his story on to your Friends and Family. For those who can't, please say a prayer for our success in this great undertaking! I know that God's hand is already in the works.
Imagine our Happiness and Excitement after being told for over 20 years there was nothing to even try to help!
Treatments can begin the end of November.
Thanks for caring!
Pam Shaw
Organizer
Pam Ronan Shaw
Organizer
Boynton Beach, FL
