CRPS Treatment Fund For Tristian
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My son Tristian was a normal healthy and happy boy who loved playing with his brother Alexei who is his best friend. On October 10, 2015 we had a wonderful day as a family at the Nashville Zoo. That evening on our way home we had stopped for an errand. Tristian the sweet boy that he is said he would help me with the errand. He got out of the car to do the errand for me. As he ran back to the car he slipped off the curb and fell full body weight hitting his knee on the bottom of the car injurying his knee. The injury did not seem severe in the beginning but with each passing day his pain in his knee was increasing. I knew there was something wrong with Tristian's knee. From the first day he injured his knee he could not bare any weight on his leg and was using crutches. 3 weeks into his injury he was already using a transport chair and in severe pain. His first diagnoses was a bruise to his knee growth plate and was expected to heal in 3-4 weeks. But with each passing day he experienced increased excruciating pain. Finally I had two special friends who told me they believed he had RSD/CRPS. I took this information to his orthopedic doctor and finally was referred to a specialist and finally Tristian was diagnosed with RSD/CRPS. It is hard to get a diagnoses for CRPS because not many doctors or medical specialist have ever heard of CRPS. We were lucky to have an early diagnoses.
Complex regional pain syndrome (CRPS), also called reflex sympathetic dystrophy syndrome (RSD), is a chronic pain condition in which high levels of nerve impulses are sent to an affected site. Experts believe that CRPS occurs as a result of dysfunction in the central or peripheral nervous systems. CRPS is usually caused by injury to the soft tissue like the ankle, knee, wrist, elbow or a damaged nerve.
Complex Regional Pain Syndrome (CRPS) is a rare, debilitating nerve disease that affects 1 in 4,000 people every year. The pain from CRPS is ranked as the most excruciating form of chronic pain that exists today.
A person who has RSD/CRPS experience:
1. Allydonia, which is a high sensitivity to touch. If you can imagine a Feather touching your skin, but it feeling like a blowtorch instead...that is Allydonia. 2. The area is likely to swell, exhibit a color change (red or purple or mottled in appearance) and be COLD to the touch. 3. The Pain Feels "like being coated in dry ice, wrapped in barb wire, and set on fire" CRPS is known as the "Suicide Disease" as suicide is the leading cause of death among people with CRPS due to the excruciating pain that one experiences 24 hours a day. There is no known cure for CRPS. People with CRPS experience a wide range of symptoms and there is no easy, one size fits all, treatment for CRPS. The majority of treatments that can help give some quality of life to a CRPS patient is not covered by insurance and very costly therefore leaving the patient/family with a financial burden and sometimes putting them into bankruptcy.
Tristian has been in this nightmare with CRPS for a year now. CRPS stole his childhood, stole his happeness, has isolated him from friends and he has been unable to go to school for the past year. He struggles to get through each day. Tristian can no longer go places except to his doctor appointments. We can no longer do things as a family. As a parent I have to divide my time by staying home with Tristian and then finding time to take his brother places to try to give his brother as much as a normal life as we can. Tristian and Alexei miss the brotherly bond they use to have running, playing, wrestling and many other bonding things they did as brothers. They have had to create new ways to bond.
CRPS has left Tristian with a lot of health issues that keeps him struggling a year later. It has been a roller coaster of health issues for him. CRPS has left us with no more additional funds to keep getting him the treatments he needs that can help him have a little bit of quality of life. Our insurance ran out in January of 2016 for PT leaving him with a huge Gait and he struggles to walk. He can't walk more than 10 - 15 steps without being exhausted and needing to sit down. He needs more PT to try to correct his walking. CRPS has caused neurological issues he struggles with everyday. He experiences daily miss-firing or brain zaps of electrical impulses that hurt his head. He has over vocalizing, tics and over stimulaton of light. The nerve endings in his ears are so senstive that when sound enters his ears he screams in pain. We have to keep everything in the house as quite as possible. He fights fatigue and insomnia at the same time. He fights being nauseous and unable to eat. He fights extreme anxiety. All these issues leave him exhausted and not sure how much longer he can deal with CRPS.
A lot of the treatments that can help someone with CRPS are alternative treatments such as chiropractic care, massage therapy, ketamine treatments, NRCT, vitamins and supplements, exercise with a trainer and many more that is not covered by insurance that we must cover ourselves. There is no children's specialist in the Nashville area for CRPS. Our insurance would not cover sending Tristian to a children's CRPS treatment center out-of-state where he would have been hospitalized for 6-8 weeks to treat all of his symptoms therefore leaving me to piece treatments together and going from doctor to doctor to find him help. The majority of doctors have never heard of CRPS so it is hard to find a doctor who is willing to take on such a huge challenge.
Besides getting Tristian medical treament, he sees a chiropractor for adustments which is not covered by insurance and he also receives NRCT (Nerological Relief Center Technique- not covered by insurance) to try to heal his brain and central nervous system. We were having huge success with NRCT and recently he has had a huge set back which is normal with CRPS. You get a little ahead of CRPS and then it comes back with a vengeance wreaking more havoc on the body. This leaves me now in search of other treatments to try to help him.
I have been introduced and have had the pleasure to speaking with Dr. Rhodes in Houston, TX who specializes in CRPS. He also has had CRPS for many years and developed the Vecttor Therapy to help people with the symptoms of CRPS and continues to have huge success treating CRPS. I have several friends and have spoken to many people using the Vecttor Therapy with huge success. The great thing about the Vecttor Therapy is that the Vecttor Machine can be purchased and you are able to treat yourself at home. The Vecttor Machine is very expensive. The Vecttor Therapy has been FDA approved for CRPS but the insurance company still does not recognize this treatment.
We have run out of funds to help Tristian with continued treatments. We are hoping to get help raising money to be able to take Tristian to see Dr. Rhodes and have treatment with the Vecttor Therapy. We need to raise money for roundtrip airfare to Houston, lodging, food, the appointment with Dr. Rhodes and to be able to purchase the Vecttor Therapy machine.
The rest of the money raised and any additional money beyond our goal will allow us to pay for PT, more chiropractic care, more NRCT, vitamins and supplements he needs, a wheelchair, and many other things that can help him feel a little bit better.
As a CRPS Parent Warrior I must have a toolbox of treatments that can help give him some relief of the pain and discomfort he experiences daily. With being a Newbie to CRPS I am still learning daily on what helps him and what doesn't. I try everything in my power to help find him some kind of hope and happiness to get him through each day.
Please consider being apart of his gofundme and help him find some relief from CRPS and give him hope to get through another day. Please share with your family and friends, your church or personal groups and work friends that may be able to help raise funds for Tristian.
If you would like to send money by personal check because a portion (8%) of the money raised on gofundme does go back to gofundme. Please contact me if you'd rather send a check to Tristian and I will send you our mailing address.
Thank you from the bottom of our hearts and please pray for Tristian and our family. Tristian's fb page: Tristian's journey with Complex Regional Pain Syndrome
https://www.facebook.com/TristiansjourneyCRPS/
The Vecttor Therapy:
www.vecttor.com
Complex regional pain syndrome (CRPS), also called reflex sympathetic dystrophy syndrome (RSD), is a chronic pain condition in which high levels of nerve impulses are sent to an affected site. Experts believe that CRPS occurs as a result of dysfunction in the central or peripheral nervous systems. CRPS is usually caused by injury to the soft tissue like the ankle, knee, wrist, elbow or a damaged nerve.
Complex Regional Pain Syndrome (CRPS) is a rare, debilitating nerve disease that affects 1 in 4,000 people every year. The pain from CRPS is ranked as the most excruciating form of chronic pain that exists today.
A person who has RSD/CRPS experience:
1. Allydonia, which is a high sensitivity to touch. If you can imagine a Feather touching your skin, but it feeling like a blowtorch instead...that is Allydonia. 2. The area is likely to swell, exhibit a color change (red or purple or mottled in appearance) and be COLD to the touch. 3. The Pain Feels "like being coated in dry ice, wrapped in barb wire, and set on fire" CRPS is known as the "Suicide Disease" as suicide is the leading cause of death among people with CRPS due to the excruciating pain that one experiences 24 hours a day. There is no known cure for CRPS. People with CRPS experience a wide range of symptoms and there is no easy, one size fits all, treatment for CRPS. The majority of treatments that can help give some quality of life to a CRPS patient is not covered by insurance and very costly therefore leaving the patient/family with a financial burden and sometimes putting them into bankruptcy.
Tristian has been in this nightmare with CRPS for a year now. CRPS stole his childhood, stole his happeness, has isolated him from friends and he has been unable to go to school for the past year. He struggles to get through each day. Tristian can no longer go places except to his doctor appointments. We can no longer do things as a family. As a parent I have to divide my time by staying home with Tristian and then finding time to take his brother places to try to give his brother as much as a normal life as we can. Tristian and Alexei miss the brotherly bond they use to have running, playing, wrestling and many other bonding things they did as brothers. They have had to create new ways to bond.
CRPS has left Tristian with a lot of health issues that keeps him struggling a year later. It has been a roller coaster of health issues for him. CRPS has left us with no more additional funds to keep getting him the treatments he needs that can help him have a little bit of quality of life. Our insurance ran out in January of 2016 for PT leaving him with a huge Gait and he struggles to walk. He can't walk more than 10 - 15 steps without being exhausted and needing to sit down. He needs more PT to try to correct his walking. CRPS has caused neurological issues he struggles with everyday. He experiences daily miss-firing or brain zaps of electrical impulses that hurt his head. He has over vocalizing, tics and over stimulaton of light. The nerve endings in his ears are so senstive that when sound enters his ears he screams in pain. We have to keep everything in the house as quite as possible. He fights fatigue and insomnia at the same time. He fights being nauseous and unable to eat. He fights extreme anxiety. All these issues leave him exhausted and not sure how much longer he can deal with CRPS.
A lot of the treatments that can help someone with CRPS are alternative treatments such as chiropractic care, massage therapy, ketamine treatments, NRCT, vitamins and supplements, exercise with a trainer and many more that is not covered by insurance that we must cover ourselves. There is no children's specialist in the Nashville area for CRPS. Our insurance would not cover sending Tristian to a children's CRPS treatment center out-of-state where he would have been hospitalized for 6-8 weeks to treat all of his symptoms therefore leaving me to piece treatments together and going from doctor to doctor to find him help. The majority of doctors have never heard of CRPS so it is hard to find a doctor who is willing to take on such a huge challenge.
Besides getting Tristian medical treament, he sees a chiropractor for adustments which is not covered by insurance and he also receives NRCT (Nerological Relief Center Technique- not covered by insurance) to try to heal his brain and central nervous system. We were having huge success with NRCT and recently he has had a huge set back which is normal with CRPS. You get a little ahead of CRPS and then it comes back with a vengeance wreaking more havoc on the body. This leaves me now in search of other treatments to try to help him.
I have been introduced and have had the pleasure to speaking with Dr. Rhodes in Houston, TX who specializes in CRPS. He also has had CRPS for many years and developed the Vecttor Therapy to help people with the symptoms of CRPS and continues to have huge success treating CRPS. I have several friends and have spoken to many people using the Vecttor Therapy with huge success. The great thing about the Vecttor Therapy is that the Vecttor Machine can be purchased and you are able to treat yourself at home. The Vecttor Machine is very expensive. The Vecttor Therapy has been FDA approved for CRPS but the insurance company still does not recognize this treatment.
We have run out of funds to help Tristian with continued treatments. We are hoping to get help raising money to be able to take Tristian to see Dr. Rhodes and have treatment with the Vecttor Therapy. We need to raise money for roundtrip airfare to Houston, lodging, food, the appointment with Dr. Rhodes and to be able to purchase the Vecttor Therapy machine.
The rest of the money raised and any additional money beyond our goal will allow us to pay for PT, more chiropractic care, more NRCT, vitamins and supplements he needs, a wheelchair, and many other things that can help him feel a little bit better.
As a CRPS Parent Warrior I must have a toolbox of treatments that can help give him some relief of the pain and discomfort he experiences daily. With being a Newbie to CRPS I am still learning daily on what helps him and what doesn't. I try everything in my power to help find him some kind of hope and happiness to get him through each day.
Please consider being apart of his gofundme and help him find some relief from CRPS and give him hope to get through another day. Please share with your family and friends, your church or personal groups and work friends that may be able to help raise funds for Tristian.
If you would like to send money by personal check because a portion (8%) of the money raised on gofundme does go back to gofundme. Please contact me if you'd rather send a check to Tristian and I will send you our mailing address.
Thank you from the bottom of our hearts and please pray for Tristian and our family. Tristian's fb page: Tristian's journey with Complex Regional Pain Syndrome
https://www.facebook.com/TristiansjourneyCRPS/
The Vecttor Therapy:
www.vecttor.com
Organizer
Tracy Morgan Kosar
Organizer
Spring Hill, TN
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