LIZZIE ‘S JOURNEY
Donation protected
Hello everyone, friends, and family,
My daughter Lizzie has a genetic disorder called Ehler Danlos. This disease has affected her body's connective tissue causing severe bowel dismotility. Over the past 10+ years she has endured over 23 surgeries fighting for her life. She ultimately experienced total bowel failure and required a bowel transplant to survive. In August of 2016, Lizzie was so fortunate to receive a small bowel transplant. Unfortunately in March 2017, her transplant went into rejection. She spent a year in the hospital fighting to save her new organ, but after several more surgeries and procedures, last resort chemo and anti rejection medication, and nearly losing her life her transplant failed and had to be removed. This has left Lizzie with only 23 inches of bowel and the inability to eat and absorb nutrients. In order for Lizzie to survive she has to be fed through TPN (nutrients/vitamins/lipids delivered through her heart). Right now TPN is the only way she can survive but it also causing her kidneys and liver to fail. Lizzie was a hematology and oncology nurse for 7 years until she was unable to work anymore. She is a mother of beautiful twin 3 year old girls, a loving friend, sister, daughter, aunt, and cousin. Lizzie now needs to travel to Indiana University for 5 days of testing and evaluation for her to receive a multi visceral transplant, including the stomach, pancreases, liver, and bowel. The State of Michigan has dropped her Medicaid services, causing her to pay over $700 a month for insurance premiums and copays. She will need help with her medical bills, travel, and housing. This is the only way for her to be able to fight to save her life. Any help and prayers are greatly appreciated.
Thank you everyone for your continued love and support for Lizzie and our family.
My daughter Lizzie has a genetic disorder called Ehler Danlos. This disease has affected her body's connective tissue causing severe bowel dismotility. Over the past 10+ years she has endured over 23 surgeries fighting for her life. She ultimately experienced total bowel failure and required a bowel transplant to survive. In August of 2016, Lizzie was so fortunate to receive a small bowel transplant. Unfortunately in March 2017, her transplant went into rejection. She spent a year in the hospital fighting to save her new organ, but after several more surgeries and procedures, last resort chemo and anti rejection medication, and nearly losing her life her transplant failed and had to be removed. This has left Lizzie with only 23 inches of bowel and the inability to eat and absorb nutrients. In order for Lizzie to survive she has to be fed through TPN (nutrients/vitamins/lipids delivered through her heart). Right now TPN is the only way she can survive but it also causing her kidneys and liver to fail. Lizzie was a hematology and oncology nurse for 7 years until she was unable to work anymore. She is a mother of beautiful twin 3 year old girls, a loving friend, sister, daughter, aunt, and cousin. Lizzie now needs to travel to Indiana University for 5 days of testing and evaluation for her to receive a multi visceral transplant, including the stomach, pancreases, liver, and bowel. The State of Michigan has dropped her Medicaid services, causing her to pay over $700 a month for insurance premiums and copays. She will need help with her medical bills, travel, and housing. This is the only way for her to be able to fight to save her life. Any help and prayers are greatly appreciated.
Thank you everyone for your continued love and support for Lizzie and our family.
Organizer
Rita Romani
Organizer
Grandville, MI
