RILEY STEINBACH'S RIDE FOR LIFE!
Donation protected
Riley Steinbach is a 12 year old boy who suffers from Duchenne Muscular Dystrophy. The main symptom of Duchenne muscular dystrophy, a progressive neuromuscular disorder. Duchenne MD results in progressive loss of strength in all muscle function. The progressive muscle weakness leads to serious medical problems, particularly issues relating to the heart and lungs and boys with Duchenne typically lose their ultimately battle in their twenties.
Anger, shock, and sadness are the prevailing feelings that we have towards his condition!
When he was diagnosed 5 years ago, we were told that he had a mild version of Muscular Dystrophy called Beckers- as you can imagine we were relieved to know it was the lesser of the two evils for diagnosis. We were under the impression that although Riley would struggle, he could continue to walk well into his 40's needing little assistance. But as time went on this past spring, we noticed significant changes in his stance, walk, ability to get up off the floor, using stairs and losing energy quickly. It was at that point that we decided to confirm his diagnosis and be sure that the prognosis was correct. About eight months ago, we learned the devastating news that Riley did in fact have Duchenne Muscular Dystrophy.
He has been such an amazing inspiration to so many people! He has this incredible strength, and he is teaching us how important life is! He has taught us to not complain about being "tired" or that giving up is not an option for him, so it can't be for us!
As Riley continues to progress, his needs will increase. He will eventually lose all mobility and ability to function the normal tasks. He will becoming 100% dependent on us as his family to do his everyday care.
Because of this progression, Riley needs a wheelchair that will be suitable for his needs. One that has the ability to stand him straight up, lay him flat on his back, and move to many different positions to allow him to be more independent. His Dr. recommended a specific wheelchair called the Permobil f5vs chair. This chair will allow him to stand straight up (to continue to use his tummy muscles and help prevent cramping, constipation as well as continue to keep his entire body moving as needed! If he doesn't use his muscles, he looses them!
Along with the wheelchair, we have to have a van to be able to transport him to and from any location. We also will have to do home modifications to our main living area to transition it into a living space for him and discussing options of adding a small addition off our sunroom on the main level of our home.
We have great insurance, well.. I so we thought! Our Insurance is DENYING Riley the Dr. recommended chair! They changed their policies two months ago to only cover a STANDARD BASIC WHEELCHAIR for any disability(child or adult)
The recommendation should be based on his needs and future needs! The pricing difference is between 15-20,000 dollars which is our out of pocket expense after deductible for the chair alone!
We are a hard working family who pays our dues to our state and government and our community! We try to hold our american values and live the american dream just like every other family! Because we both work, and pay high dollars for medical insurance, we feel like our son is being punished! It's shameful, and to be honest it's embarrasing to know that our insurance is not basing each NEED on an individual evalutation!
This is not easy for us to ask for help! We have been here before! However, the needs were much different 5 years ago than they are today! Our son will be going to school in a couple of weeks and is not walking! He will have to use his portable adult size mobility chair and we will have to load it up in the back of a truck to transport him to and from school and anywhere we go.
Riley is not one to complain, or even ask for things! He knows how hard we are working to make things as easy as possible for him. But it's very noticable as his parents to see that this is something he really not only needs, but wants! Not to mention the fact that it looks "so cool" When we went up to the mobility location to get him fitted for his chair, he was actually very excited for the idea of him being more independent! We don't want to dissapoint him, and we certainly don't want to over promise either!
I wasn't going to share this story, but honestly, those who know what happened at school will contest that it was heart wrenching to see. Riley was embarrased last year at school to eat lunch. We couldn't figure out why, but then learned this... He would be outside for recess before lunch, once the bell would ring (he would have the option to go in a few minutes early to beat the lunch line) but he didn't want to single himself out, so he would wait most of the time. Once he would get into the lunch room, his classmates had already gone through the lunch line, and Riley was having a difficult time carrying his lunch tray due to lack of strength in his arms, hands and of course his ability to walk. But this particular day, Riley got the courage to do it! He walked up, got his tray of food and started walking to the table to sit by his buddies. Riley fell, and his tray dropped to the floor in front of his peers and friends. Now he was so embarrased, and expected people to stare and laugh. But that didn't happen! Nobody laughed, and he was offered help to get up right away (which is one of the wonderful things we love about St. Clair school) But just to know that the one time he gets enough courage to do the impossible, his body let him down! I did learn later that there was something slippery on the floor that may have played a roll in his fall . However, I think the average kid could have probably caught themselves and carried on! We feel the peace of mind, and more importantly the safety factor is our main concern for our son at school this year and the years to come!
We would appreciate any support we can get to make life a little easier on him first and formost, but also to make the financial worries a little less stressful.
We are already so blessed to have such an amazing community around our son at St. Clair School! As well as the support from our friends and family members who know and love Riley so much!
We also ask this of those who love our son... don't be afraid to ask about his condition to us! You won't offend us! We are very open about his condition, and know what we are facing in the future! Things will just get harder moving forward. But we can tell you that having the support we do makes things ten times easier for us to face these challenges head on!
God Bless you all, and thank you so much for helping our family!
Anger, shock, and sadness are the prevailing feelings that we have towards his condition!
When he was diagnosed 5 years ago, we were told that he had a mild version of Muscular Dystrophy called Beckers- as you can imagine we were relieved to know it was the lesser of the two evils for diagnosis. We were under the impression that although Riley would struggle, he could continue to walk well into his 40's needing little assistance. But as time went on this past spring, we noticed significant changes in his stance, walk, ability to get up off the floor, using stairs and losing energy quickly. It was at that point that we decided to confirm his diagnosis and be sure that the prognosis was correct. About eight months ago, we learned the devastating news that Riley did in fact have Duchenne Muscular Dystrophy.
He has been such an amazing inspiration to so many people! He has this incredible strength, and he is teaching us how important life is! He has taught us to not complain about being "tired" or that giving up is not an option for him, so it can't be for us!
As Riley continues to progress, his needs will increase. He will eventually lose all mobility and ability to function the normal tasks. He will becoming 100% dependent on us as his family to do his everyday care.
Because of this progression, Riley needs a wheelchair that will be suitable for his needs. One that has the ability to stand him straight up, lay him flat on his back, and move to many different positions to allow him to be more independent. His Dr. recommended a specific wheelchair called the Permobil f5vs chair. This chair will allow him to stand straight up (to continue to use his tummy muscles and help prevent cramping, constipation as well as continue to keep his entire body moving as needed! If he doesn't use his muscles, he looses them!
Along with the wheelchair, we have to have a van to be able to transport him to and from any location. We also will have to do home modifications to our main living area to transition it into a living space for him and discussing options of adding a small addition off our sunroom on the main level of our home.
We have great insurance, well.. I so we thought! Our Insurance is DENYING Riley the Dr. recommended chair! They changed their policies two months ago to only cover a STANDARD BASIC WHEELCHAIR for any disability(child or adult)
The recommendation should be based on his needs and future needs! The pricing difference is between 15-20,000 dollars which is our out of pocket expense after deductible for the chair alone!
We are a hard working family who pays our dues to our state and government and our community! We try to hold our american values and live the american dream just like every other family! Because we both work, and pay high dollars for medical insurance, we feel like our son is being punished! It's shameful, and to be honest it's embarrasing to know that our insurance is not basing each NEED on an individual evalutation!
This is not easy for us to ask for help! We have been here before! However, the needs were much different 5 years ago than they are today! Our son will be going to school in a couple of weeks and is not walking! He will have to use his portable adult size mobility chair and we will have to load it up in the back of a truck to transport him to and from school and anywhere we go.
Riley is not one to complain, or even ask for things! He knows how hard we are working to make things as easy as possible for him. But it's very noticable as his parents to see that this is something he really not only needs, but wants! Not to mention the fact that it looks "so cool" When we went up to the mobility location to get him fitted for his chair, he was actually very excited for the idea of him being more independent! We don't want to dissapoint him, and we certainly don't want to over promise either!
I wasn't going to share this story, but honestly, those who know what happened at school will contest that it was heart wrenching to see. Riley was embarrased last year at school to eat lunch. We couldn't figure out why, but then learned this... He would be outside for recess before lunch, once the bell would ring (he would have the option to go in a few minutes early to beat the lunch line) but he didn't want to single himself out, so he would wait most of the time. Once he would get into the lunch room, his classmates had already gone through the lunch line, and Riley was having a difficult time carrying his lunch tray due to lack of strength in his arms, hands and of course his ability to walk. But this particular day, Riley got the courage to do it! He walked up, got his tray of food and started walking to the table to sit by his buddies. Riley fell, and his tray dropped to the floor in front of his peers and friends. Now he was so embarrased, and expected people to stare and laugh. But that didn't happen! Nobody laughed, and he was offered help to get up right away (which is one of the wonderful things we love about St. Clair school) But just to know that the one time he gets enough courage to do the impossible, his body let him down! I did learn later that there was something slippery on the floor that may have played a roll in his fall . However, I think the average kid could have probably caught themselves and carried on! We feel the peace of mind, and more importantly the safety factor is our main concern for our son at school this year and the years to come!
We would appreciate any support we can get to make life a little easier on him first and formost, but also to make the financial worries a little less stressful.
We are already so blessed to have such an amazing community around our son at St. Clair School! As well as the support from our friends and family members who know and love Riley so much!
We also ask this of those who love our son... don't be afraid to ask about his condition to us! You won't offend us! We are very open about his condition, and know what we are facing in the future! Things will just get harder moving forward. But we can tell you that having the support we do makes things ten times easier for us to face these challenges head on!
God Bless you all, and thank you so much for helping our family!
Organizer and beneficiary
Anita Wolters Steinbach
Organizer
Mankato, MN
Riley Steinbach
Beneficiary