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Our daughter, Danielle Stanford, is a 30-year-old PhD candidate studying criminal justice and conducting research on violent victimization. Her life came to an abrupt halt when symptoms of her gastroparesis, or stomach paralysis worsened to the point of being unable to digest and absorb food, and even fluids. Dani’s condition has progressed to Grade 3 which means she is in gastric failure. While there is no cure, there is a promising surgery available. There’s only problem. She has to pay 100% of costs out of pocket as insurance does not cover it.
Dani has been hospitalized multiple times in the last few years due to complications from gastroparesis including dehydration, malnourishment and organ failure. There is no cure for gastroparesis, and Dani has not responded to medication or treatments. Her only option for digesting and absorbing foods again is to get a Gastric peroral endoscopic myotomy (G-POEM). The procedure involves cutting a tunnel from the paralyzed stomach into the intestine, offering stomach contents an exit route. With her physical condition deteriorating and surgery on the horizon, Dani decided to move back to Erie from Philly to live with us where we could provide her much needed care and support.
There are only a handful of surgeons in the country who are capable of doing this surgery. Fortunately, Dani found a surgeon at Thomas Jefferson University Hospital (TJUH) in Philly where she has lived for 12 years. Surgery was scheduled on July 23, 2021, Norm’s and my 33rd wedding anniversary. Dani’s prep consisted of a grueling abstinence from solid food for 1 week prior to surgery. While Dani and I were driving from Erie to Philly the day before her surgery, the surgeon called to cancel because insurance denied coverage due to its novelty. This was a devastating blow. Dani was holding onto a string. I demanded the surgeon not cancel and insisted I would pay for it. I had no business saying that because I had no means to pay for surgery but I was desperate.
The G-POEM is a “newer” method first performed in 2013. With Dani on the verge of dehydration and malnutrition we kept traveling to see the surgeon. Dani was more discouraged than ever for she would have to see the surgeon in the ER instead of the OR. So instead of getting corrective surgery, Dani had a jejunal feeding tube placed surgically in order for her to get nutrition and hydration. She was inpatient for 5 days. The J-tube is not a long-term solution. It carries a high risk, is difficult to maintain and is incredibly painful.
Following her procedure, Dani’s surgeon appealed the insurance company’s denial to no avail. Since TUJH would only do the surgery if insurance covered it, we started searching for another surgeon. Surprisingly, we found a highly skilled surgeon at the Cleveland Clinic which is much closer to Erie and an institution of excellence. The bigger shock came when the Clinic agreed to let us pay up front at a discounted rate. This was great news, for without the surgery frequent hospitalizations and life-saving treatment is the alternative when things get bad. Having the G-POEM would allow Dani to live the life of a normal 30-year-old and get back to what she is really passionate about—supporting victims of crimes and preventing violent victimization.
This is why we are reaching out to family and friends to help. We appreciate anything you can do.
Thank you,
Danielle, Norm & Monica Stanford
Dani has been hospitalized multiple times in the last few years due to complications from gastroparesis including dehydration, malnourishment and organ failure. There is no cure for gastroparesis, and Dani has not responded to medication or treatments. Her only option for digesting and absorbing foods again is to get a Gastric peroral endoscopic myotomy (G-POEM). The procedure involves cutting a tunnel from the paralyzed stomach into the intestine, offering stomach contents an exit route. With her physical condition deteriorating and surgery on the horizon, Dani decided to move back to Erie from Philly to live with us where we could provide her much needed care and support.
There are only a handful of surgeons in the country who are capable of doing this surgery. Fortunately, Dani found a surgeon at Thomas Jefferson University Hospital (TJUH) in Philly where she has lived for 12 years. Surgery was scheduled on July 23, 2021, Norm’s and my 33rd wedding anniversary. Dani’s prep consisted of a grueling abstinence from solid food for 1 week prior to surgery. While Dani and I were driving from Erie to Philly the day before her surgery, the surgeon called to cancel because insurance denied coverage due to its novelty. This was a devastating blow. Dani was holding onto a string. I demanded the surgeon not cancel and insisted I would pay for it. I had no business saying that because I had no means to pay for surgery but I was desperate.
The G-POEM is a “newer” method first performed in 2013. With Dani on the verge of dehydration and malnutrition we kept traveling to see the surgeon. Dani was more discouraged than ever for she would have to see the surgeon in the ER instead of the OR. So instead of getting corrective surgery, Dani had a jejunal feeding tube placed surgically in order for her to get nutrition and hydration. She was inpatient for 5 days. The J-tube is not a long-term solution. It carries a high risk, is difficult to maintain and is incredibly painful.
Following her procedure, Dani’s surgeon appealed the insurance company’s denial to no avail. Since TUJH would only do the surgery if insurance covered it, we started searching for another surgeon. Surprisingly, we found a highly skilled surgeon at the Cleveland Clinic which is much closer to Erie and an institution of excellence. The bigger shock came when the Clinic agreed to let us pay up front at a discounted rate. This was great news, for without the surgery frequent hospitalizations and life-saving treatment is the alternative when things get bad. Having the G-POEM would allow Dani to live the life of a normal 30-year-old and get back to what she is really passionate about—supporting victims of crimes and preventing violent victimization.
This is why we are reaching out to family and friends to help. We appreciate anything you can do.
Thank you,
Danielle, Norm & Monica Stanford
Co-organizers (2)
Monica Stanford
Organizer
Erie, PA
Norm Stanford
Co-organizer