Lydia's Fight Against AMPS
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In 2013, after suffering from Whooping Cough, our beautiful Lydia was diagnosed with Amplified Musculoskeletal Pain Syndrome (AMPS). This diagnosis wasn’t easy—it took countless ER visits, visits to specialists, tests and more tests, and even surgeries to make this determination. AMPS encompasses a number of pain disorders caused by an abnormal pain reflex. In other words, Lydia's brain is stuck on sending real pain signals through her body where no injury or illness exist, and when she is sick or hurt, the symptoms are many times worse than normal. Imagine waking every morning tired and in severe pain; joint and muscle pain, migraines, abdominal cramps. Now imagine suffering like this through your final years of childhood, with little to no relief. Finally, think of what it would be like if nobody believed you: not the doctors, your teachers, your friends or even members of your family.
Lydia has lived like this for four years, unable to regularly attend school and church, or participate in the social and physical activities common for a girl her age. Lydia has had to use crutches and a wheelchair at times, and has had to be home-schooled off and on to keep her academically on track. We have made lifestyle changes, including diet, to combat this condition with no positive results. Despite the disability, Lydia has managed to stay positive until recently. On the evening of August 5th, with no warning or reason, Lydia began crying and screaming, complaining of abdominal pain. We were sure she was having appendicitis. Lydia spent the next two weeks in the hospital, her pain at a constant 10, while the doctors tried to figure out what was wrong. The cause this time was a fungal infection in her esophagus and stomach, and the pain was due to inflamed abdominal lymph nodes. Incidentally, this sort of pain is comparable with childbirth. The infection was resolved, but the pain remains because of the AMPS. No medication, even high profile narcotics have been effective in even a slight reduction in pain. Every night Lydia cries herself to sleep out of exhaustion from the pain. Every waking moment, if she is not actually crying tears, she moans in a persistent state of extreme agony, so bad that she has often expressed her loss of hope.
Our final option to help Lydia live the pain-free life she has been denied and deserves is the AMPS Program at Providence Medical Center in Wanye Nebraska. The 4 week program is one of only a handful in the country and the only one close to home. The Program can receive Lydia as soon as next week, which is amazing. We are desperate to get her in the Program as soon as possible and the only obstacle is money. We are asking for $7,000 for the co-pay and to cover the cost of travel, room and board for Lydia and Lisa, who will both have to stay in a hotel.
It is difficult to ask for help, but when it comes to one’s child, there is nothing a parent wouldn’t do. Our little family of three is strong because our faith in God and our love for one another, but we cannot do this by ourselves. Curing Lydia is our sole priority and we will be eternally grateful for helping her overcome this living nightmare.
For information about AMPS and the AMPS Program, please follow this link:http://www.providencemedical.com/vnews/display.v/ART/53d98b09b8cb3
Lydia has lived like this for four years, unable to regularly attend school and church, or participate in the social and physical activities common for a girl her age. Lydia has had to use crutches and a wheelchair at times, and has had to be home-schooled off and on to keep her academically on track. We have made lifestyle changes, including diet, to combat this condition with no positive results. Despite the disability, Lydia has managed to stay positive until recently. On the evening of August 5th, with no warning or reason, Lydia began crying and screaming, complaining of abdominal pain. We were sure she was having appendicitis. Lydia spent the next two weeks in the hospital, her pain at a constant 10, while the doctors tried to figure out what was wrong. The cause this time was a fungal infection in her esophagus and stomach, and the pain was due to inflamed abdominal lymph nodes. Incidentally, this sort of pain is comparable with childbirth. The infection was resolved, but the pain remains because of the AMPS. No medication, even high profile narcotics have been effective in even a slight reduction in pain. Every night Lydia cries herself to sleep out of exhaustion from the pain. Every waking moment, if she is not actually crying tears, she moans in a persistent state of extreme agony, so bad that she has often expressed her loss of hope.
Our final option to help Lydia live the pain-free life she has been denied and deserves is the AMPS Program at Providence Medical Center in Wanye Nebraska. The 4 week program is one of only a handful in the country and the only one close to home. The Program can receive Lydia as soon as next week, which is amazing. We are desperate to get her in the Program as soon as possible and the only obstacle is money. We are asking for $7,000 for the co-pay and to cover the cost of travel, room and board for Lydia and Lisa, who will both have to stay in a hotel.
It is difficult to ask for help, but when it comes to one’s child, there is nothing a parent wouldn’t do. Our little family of three is strong because our faith in God and our love for one another, but we cannot do this by ourselves. Curing Lydia is our sole priority and we will be eternally grateful for helping her overcome this living nightmare.
For information about AMPS and the AMPS Program, please follow this link:http://www.providencemedical.com/vnews/display.v/ART/53d98b09b8cb3
Organizer
Lisa Mavroudis
Organizer
Denver, CO
