CRPS treatment to HEAL Zachary
Donation protected
Please help us get Zachary the treatments he needs!!!!
It is with prayerful and humble hearts that we come to you, our family and friends, and ask for your help in healing Zachary.
Many of you know Zachary, the youngest of our four beautiful children. When you think of him, images of him crushing his opponent on the football field, striking out batters at home plate, or shooting three-pointers on the basketball court may come to mind.
(2012)
(January 2013)
Until March 1, 2013, those activities filled Zachary's days, nights, weekends, and dreams. Today his days are much different. Long gone are the days of being like his 11 year old friends, without a care in the world. Zachary's days now are filled with constant pain, doctors' appointments, physical therapy, narcotic pain medications, nerve blocking medication, and TENS units.
March 1,2013, as many of you know, at just 10 years old, Zachary suffered a total detachment of his lateral meniscus, requiring reconstructive knee surgery on March 12, 2013. As Zachary progressed following surgery, he began experiencing severe pain in the muscles of his lower legs. He described this pain as burning and like someone was stabbing him with a knife. His surgeon originally believed he was describing shin splint pain and took him out of PT and all activities for one month to allow his legs to heal. However, the pain did not resolve, instead it worsened and spread into the tibia bones of each leg.
(March 2013)
As if the pain Zachary was dealing with was not enough, on September 24th, the unthinkable happened, and he retore his meniscus. Due to the extent of the tear and lack of blood flow following the first surgery, his doctor was forced to remove 80-90% of his meniscus on October 17, 2013. Due to this surgery, Zachary was placed on a transplant list for a meniscus transplant.
In the midst of the surgeries and all the time spent in a wheelchair due to being non-weightbearing, the pain in his legs continued to intensify, and spread to both ankles. In an effort to alleviate the pain, he was put in bilateral leg casts for 8 weeks, however, the pain worsened.
After many specialists, procedures, and tests, on April 3, 2014, Zachary was diagnosed by a pediatric pain specialist in D.C. with Complex Regional Pain Syndrome. For those of you unfamiliar with CRPS, American RSD Hope states "Complex Regional Pain Syndrome, or CRPS, formerly known as RSD or Reflex Sympathetic Dystrophy is a progressive disease of the Autonomic Nervous System, and more specifically, the Sympathetic Nervous System. The pain is characterized as constant, extremely intense, and out of proportion to the original injury. The pain is typically accompanied by swelling, skin changes, extreme sensitivity, and can often be debilitating. It usually affects one or more of the four limbs but can occur in any part of the body and in over 70% of the victims it spreads to additional areas". The link for more information is
http://www.rsdhope.org/what-is-crps.html
As you can see below, CRPS rates at the top of the McGill Pain Index, above chronic back pain, childbirth, and amputation.
Following the diagnosis of CRPS, we got the call we had been waiting for and on April 28, 2014, Zachary underwent surgery and received a cadavar donor lateral meniscus. He will have to have a transplant every 10 years to maintain function of his knee. He continues to heal and rehab from the transplant and will be in physical therapy for many, many months to come to overcome the atrophy and limitations created from multiple knee surgeries on a little boy. It is our understanding he is the only "child" to have ever undergone this procedure.
Since the transplant, the CRPS pain has spread and today Zachary experiences intense pain in his lower legs, his ankles, his upper thighs, and his upper arms. He also has times where his leg(s) will turn dark blue/purple, sending the RN in me into overdrive checking his pulses and capillary refill and evaluating for signs of a blood clot, only to remind myself, this is the CRPS. His feet are freezing from the inside out, and most days are ice cold to the touch. The ice cold skin will affect parts of his foot/leg/calf and the other parts of those body parts will be normal temperature. He will also get huge maroon/purplish blotches all over his legs, up onto his thighs, that can last minutes or longer.
Our hearts desire is to help our baby. As I said before, Zachary sees many doctors for his knee and a pain specialist for his CRPS in D.C., but he needs to see a CRPS specialist. Unfortunately, there are none located in Virginia. Don't get me wrong, his doctors are doing the best they can for him, but he needs to see the doctors who have dedicated their lives to treating kids like Zachary, who are performing cutting edge procedures and treatments to put this disease into remission. Sadly, many of these doctors do not take insurance, or do not take Zachary's insurance, and if they do, the insurance company refuses to pay for the treatment.
***DIAGNOSTIC UPDATE***We have just had Zachary evaluated in Rhode Island by one of the world's leading specialists in CRPS and related disorders. We learned, not only does Zachary have CRPS, but he also has Ehlers-Danlos Syndrome, EDS, a genetic disorder of the connective issue. He will require multiple medications, infusions, treatments, and therapies to address both the CRPS and the EDS, most of which are not covered by his insurance. Additionally, Zachary will travel to Rhode Island as needed for follow up, and will receive multi-day infusions in D.C. frequently.
Here is where you can help friends. If you are able and willing, please donate to help us get Zachary the treatment he needs to beat this horrible disease. Every penny collected will be used towards healing Zachary, including, but not limited to, specialist fees, therapy costs, and travel costs to get us to Rhode Island, D.C., or our next destination in the quest to HEAL Zachary. We are never going to give up fighting for Zachary and ask you to join this fight with us. He deserves to laugh, and play, and run, and jump just like any other child, and believe in a future free from pain.
Whether or not you are able to donate, I ask that you share this page, and ask all your friends to share as well, to not only bring awareness to Zachary's journey, but to spread awareness to CRPS and the many adults and children suffering daily like Zachary. Help us to help them!!
We teach Zachary that God is the ultimate healer and not only does God perform miracles, but He uses each of us as instruments to carry out His miracles.
Won't you please donate and be part of Zachary's miracle?!
Thank you and may God bless you all,
Aaron, Lisa and Zachary Woodfin
Nothing like a boy and his daddy! <3
It is with prayerful and humble hearts that we come to you, our family and friends, and ask for your help in healing Zachary.
Many of you know Zachary, the youngest of our four beautiful children. When you think of him, images of him crushing his opponent on the football field, striking out batters at home plate, or shooting three-pointers on the basketball court may come to mind.
(2012)
(January 2013)
Until March 1, 2013, those activities filled Zachary's days, nights, weekends, and dreams. Today his days are much different. Long gone are the days of being like his 11 year old friends, without a care in the world. Zachary's days now are filled with constant pain, doctors' appointments, physical therapy, narcotic pain medications, nerve blocking medication, and TENS units.
March 1,2013, as many of you know, at just 10 years old, Zachary suffered a total detachment of his lateral meniscus, requiring reconstructive knee surgery on March 12, 2013. As Zachary progressed following surgery, he began experiencing severe pain in the muscles of his lower legs. He described this pain as burning and like someone was stabbing him with a knife. His surgeon originally believed he was describing shin splint pain and took him out of PT and all activities for one month to allow his legs to heal. However, the pain did not resolve, instead it worsened and spread into the tibia bones of each leg.
(March 2013)
As if the pain Zachary was dealing with was not enough, on September 24th, the unthinkable happened, and he retore his meniscus. Due to the extent of the tear and lack of blood flow following the first surgery, his doctor was forced to remove 80-90% of his meniscus on October 17, 2013. Due to this surgery, Zachary was placed on a transplant list for a meniscus transplant.
In the midst of the surgeries and all the time spent in a wheelchair due to being non-weightbearing, the pain in his legs continued to intensify, and spread to both ankles. In an effort to alleviate the pain, he was put in bilateral leg casts for 8 weeks, however, the pain worsened.
After many specialists, procedures, and tests, on April 3, 2014, Zachary was diagnosed by a pediatric pain specialist in D.C. with Complex Regional Pain Syndrome. For those of you unfamiliar with CRPS, American RSD Hope states "Complex Regional Pain Syndrome, or CRPS, formerly known as RSD or Reflex Sympathetic Dystrophy is a progressive disease of the Autonomic Nervous System, and more specifically, the Sympathetic Nervous System. The pain is characterized as constant, extremely intense, and out of proportion to the original injury. The pain is typically accompanied by swelling, skin changes, extreme sensitivity, and can often be debilitating. It usually affects one or more of the four limbs but can occur in any part of the body and in over 70% of the victims it spreads to additional areas". The link for more information ishttp://www.rsdhope.org/what-is-crps.html
As you can see below, CRPS rates at the top of the McGill Pain Index, above chronic back pain, childbirth, and amputation.
Following the diagnosis of CRPS, we got the call we had been waiting for and on April 28, 2014, Zachary underwent surgery and received a cadavar donor lateral meniscus. He will have to have a transplant every 10 years to maintain function of his knee. He continues to heal and rehab from the transplant and will be in physical therapy for many, many months to come to overcome the atrophy and limitations created from multiple knee surgeries on a little boy. It is our understanding he is the only "child" to have ever undergone this procedure.
Since the transplant, the CRPS pain has spread and today Zachary experiences intense pain in his lower legs, his ankles, his upper thighs, and his upper arms. He also has times where his leg(s) will turn dark blue/purple, sending the RN in me into overdrive checking his pulses and capillary refill and evaluating for signs of a blood clot, only to remind myself, this is the CRPS. His feet are freezing from the inside out, and most days are ice cold to the touch. The ice cold skin will affect parts of his foot/leg/calf and the other parts of those body parts will be normal temperature. He will also get huge maroon/purplish blotches all over his legs, up onto his thighs, that can last minutes or longer.
Our hearts desire is to help our baby. As I said before, Zachary sees many doctors for his knee and a pain specialist for his CRPS in D.C., but he needs to see a CRPS specialist. Unfortunately, there are none located in Virginia. Don't get me wrong, his doctors are doing the best they can for him, but he needs to see the doctors who have dedicated their lives to treating kids like Zachary, who are performing cutting edge procedures and treatments to put this disease into remission. Sadly, many of these doctors do not take insurance, or do not take Zachary's insurance, and if they do, the insurance company refuses to pay for the treatment.
***DIAGNOSTIC UPDATE***We have just had Zachary evaluated in Rhode Island by one of the world's leading specialists in CRPS and related disorders. We learned, not only does Zachary have CRPS, but he also has Ehlers-Danlos Syndrome, EDS, a genetic disorder of the connective issue. He will require multiple medications, infusions, treatments, and therapies to address both the CRPS and the EDS, most of which are not covered by his insurance. Additionally, Zachary will travel to Rhode Island as needed for follow up, and will receive multi-day infusions in D.C. frequently.
Here is where you can help friends. If you are able and willing, please donate to help us get Zachary the treatment he needs to beat this horrible disease. Every penny collected will be used towards healing Zachary, including, but not limited to, specialist fees, therapy costs, and travel costs to get us to Rhode Island, D.C., or our next destination in the quest to HEAL Zachary. We are never going to give up fighting for Zachary and ask you to join this fight with us. He deserves to laugh, and play, and run, and jump just like any other child, and believe in a future free from pain.
Whether or not you are able to donate, I ask that you share this page, and ask all your friends to share as well, to not only bring awareness to Zachary's journey, but to spread awareness to CRPS and the many adults and children suffering daily like Zachary. Help us to help them!!
We teach Zachary that God is the ultimate healer and not only does God perform miracles, but He uses each of us as instruments to carry out His miracles.
Won't you please donate and be part of Zachary's miracle?!
Thank you and may God bless you all,
Aaron, Lisa and Zachary Woodfin
Nothing like a boy and his daddy! <3
Organizer
Lisa Marie Woodfin
Organizer
Mechanicsville, VA
