Here we are again and worse than ever. My daughter Alyssa is once again in this position of fighting for her life with these awful disease and conditions. She has Ehlers-Danlos syndrome, which has caused vascular compressions and intestinal failure along with many other comorbidities and complications. Her veins keep closing, and her bowels are blocked and failing. We have surgically corrected many of her compressions, some of which have reoccurred or had other issues because of her connective tissue disorder. The circumstance now is that she is nearly bed-bound and unable to eat due to pain and vomiting with her gastroparesis. We fear full intestinal failure, which is a dangerous road without adequate blood flow or proper treatment. Alyssa has recently had a procedure here in California to try to stent more veins that was unsuccessful due to the risk associated. She currently has a left renal bypass that was done after a failed stent graft. She has already had a bowel bypass and multiple stents in other veins. We have consulted with many surgeons across the United States to figure out what to do next or what can be done. With the nature of her conditions and complications, her best option is going to her specialist in Spain for correct diagnostics and further treatment, as in another major surgery to save her life. Yes, again. We never expected to be in this position again. But we are in dire need of help and quickly as she is declining quicker than ever. We will utilize home health and all options here in the meantime to keep her healthy enough for this major surgery that we know is a risk in itself. Please keep her in your prayers as she continues to battle the daily challenges of surviving these conditions and braces herself for another major surgery. Her fight continues, and we all continue to prepare to fight alongside her. We will be putting in a port soon for her to get nutrition at this point.

Our family has been already been through a deep heart break of losing our 37 year old son this past January. Alyssa and all of us thank you for your love and continuing support and help through our difficult and challenging times for this terrible disease has no cure. Prolonging her life is especially essential for her two children and in hopes we can get her disease and conditions in a remission or even better a cure!