Weston Walks Again
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Weston Walks Again...That’s the mantra we live by these days. Weston walks again…without pain …without effort ….the way we he used to walk without thinking about it. The way he used to participate in middle school PE, the way he used to ride his bike and do Kung Fu. Within a few short months, Weston’s world shifted dramatically from one involving typical 13 year old activities to complete inability to move about and function as he had before.
Weston’s health challenges began in October 2014 when an endoscopy confirmed that he has celiac disease. He quickly adapted to a gluten free diet and gradually his nutrient absorption levels normalized, his gut pain dissipated, and he started to grow as one would expect an adolescent to grow. But the aches and pains in his legs lingered for several months and it was apparent something was not right. In March 2015 Weston was diagnosed with Juvenile Idiopathic Arthritis (JIA) and, more specifically, enthesitis, a type of arthritis in which the point where ligaments and tendons attach to the bone is inflamed. We tried various medicines over the next many months, waiting in hopes of seeing relief from the pain in his knees, ankles, feet and toes. After trial and error with the arthritis medicines, we finally landed on Enbrel which appears to be reducing the joint inflammation somewhat.
Amidst the increasing leg pain during the fall of 2015, Weston started to experience abdominal pain. He kept telling us he thought it was appendicitis. After a week of considerable pain in his mid-section, Weston was assessed in the emergency room where ultimately a CT scan confirmed what he had predicted. An appendectomy was performed that very night.
Having recovered from the surgery, Weston began to regain some strength only to be shut down by increasing and unrelenting pain in his lower extremities. His pain, or at least his reaction to the pain, seemed to be getting worse by the day. Before long, it was clear there was something else besides arthritis at play. His pediatric rheumatologist was the one to diagnose Amplified Musculosketal Amplified Pain Syndrome (AMPS) in December 2015. That diagnosis was confirmed and further defined by a doctor at Lucile Packard Children’s Hospital at Stanford as Complex Regional Pain Syndrome (CRPS) in late January 2016. It’s now thought that the CRPS was triggered by the arthritis and exacerbated by the appendectomy. Weston was suddenly thrust into an unfamiliar world that forced him to reset his thinking about pain tolerance and how to keep moving forward in life in spite of an extraordinary level of pain every single day. Our family has had a crash course on the subject of amplified pain, little known to the general population, and through the process has connected with a surprising number of families who have also quietly confronted this rare condition and figured out how to deal with it, treat it, and not let it derail the other aspects of family life. But it’s not easy emotionally or financially.
Since the onset of Weston’s health concerns, we have incurred significant medical expenses with co-pays for frequent doctor and hospital visits, medical procedures and tests, lab work, prescriptions, and physical and occupational therapy sessions. Additionally, the loss of income to ensure that the necessary medical appointments occur has impacted our household finances substantially. The forecast is that Weston will start in the pediatric pain management program at Lucile Packard Children’s Hospital at Stanford in April 2016. This is an outpatient program that will effectively require one of us to stay with him in the vicinity of Stanford to facilitate his participation in the program for a minimum of 6 weeks to possibly 12 weeks. We anticipate incurring housing expenses near Stanford while Weston is in the program.
The financial impact of this medical crisis is significant for our family. Any contribution to offset the related mounting expenses is greatly appreciated.
Weston aspires to be the CEO of his own company some day. It is in this optimistic spirit that our family forges ahead and pictures superlative outcomes despite the current circumstances. We hope you’ll be able to help Weston get closer to realizing his dreams and help provide some relief to our family from the financial burden associated with this very unfortunate medical crisis.
Thank you for your love and support.
Lori and Bob Kinsey
Weston’s health challenges began in October 2014 when an endoscopy confirmed that he has celiac disease. He quickly adapted to a gluten free diet and gradually his nutrient absorption levels normalized, his gut pain dissipated, and he started to grow as one would expect an adolescent to grow. But the aches and pains in his legs lingered for several months and it was apparent something was not right. In March 2015 Weston was diagnosed with Juvenile Idiopathic Arthritis (JIA) and, more specifically, enthesitis, a type of arthritis in which the point where ligaments and tendons attach to the bone is inflamed. We tried various medicines over the next many months, waiting in hopes of seeing relief from the pain in his knees, ankles, feet and toes. After trial and error with the arthritis medicines, we finally landed on Enbrel which appears to be reducing the joint inflammation somewhat.
Amidst the increasing leg pain during the fall of 2015, Weston started to experience abdominal pain. He kept telling us he thought it was appendicitis. After a week of considerable pain in his mid-section, Weston was assessed in the emergency room where ultimately a CT scan confirmed what he had predicted. An appendectomy was performed that very night.
Having recovered from the surgery, Weston began to regain some strength only to be shut down by increasing and unrelenting pain in his lower extremities. His pain, or at least his reaction to the pain, seemed to be getting worse by the day. Before long, it was clear there was something else besides arthritis at play. His pediatric rheumatologist was the one to diagnose Amplified Musculosketal Amplified Pain Syndrome (AMPS) in December 2015. That diagnosis was confirmed and further defined by a doctor at Lucile Packard Children’s Hospital at Stanford as Complex Regional Pain Syndrome (CRPS) in late January 2016. It’s now thought that the CRPS was triggered by the arthritis and exacerbated by the appendectomy. Weston was suddenly thrust into an unfamiliar world that forced him to reset his thinking about pain tolerance and how to keep moving forward in life in spite of an extraordinary level of pain every single day. Our family has had a crash course on the subject of amplified pain, little known to the general population, and through the process has connected with a surprising number of families who have also quietly confronted this rare condition and figured out how to deal with it, treat it, and not let it derail the other aspects of family life. But it’s not easy emotionally or financially.
Since the onset of Weston’s health concerns, we have incurred significant medical expenses with co-pays for frequent doctor and hospital visits, medical procedures and tests, lab work, prescriptions, and physical and occupational therapy sessions. Additionally, the loss of income to ensure that the necessary medical appointments occur has impacted our household finances substantially. The forecast is that Weston will start in the pediatric pain management program at Lucile Packard Children’s Hospital at Stanford in April 2016. This is an outpatient program that will effectively require one of us to stay with him in the vicinity of Stanford to facilitate his participation in the program for a minimum of 6 weeks to possibly 12 weeks. We anticipate incurring housing expenses near Stanford while Weston is in the program.
The financial impact of this medical crisis is significant for our family. Any contribution to offset the related mounting expenses is greatly appreciated.
Weston aspires to be the CEO of his own company some day. It is in this optimistic spirit that our family forges ahead and pictures superlative outcomes despite the current circumstances. We hope you’ll be able to help Weston get closer to realizing his dreams and help provide some relief to our family from the financial burden associated with this very unfortunate medical crisis.
Thank you for your love and support.
Lori and Bob Kinsey
Organisator
Lori Kinsey
Organisator
San Ramon, CA