Rowan Collier Needs a Liver Transplant
Donation protected
Rowan continues his post-operative fight with regular lab visits and blood draws, as well as hospital procedures as we work to keep his new liver in a delicate balance with antirejection medicines. The medicines work to suppress his immune system, working so his body won't reject his new liver that is seen as a foreign body. At the same time, medicine levels have to be lowered so as to increase is immune system to fight off frequent bouts of EBV, Epstein Barr Virus.
Podisorder (PTLD) is one of the severe complications after pediatric liver transplantation. Epstein-Barr virus (EBV) infection is a major risk factor developing PTLD, and can lead to morbidity and even death.
HISTORY:
Rowan's Biliary Atresia, a pediatric liver disease, has progressed, as have our stress levels. Rowan is dual listed in two regions on the United Network for Organ Sharing list (UNOS) with a PELD (Pediatric End-stage Liver Disease) score of 50, on a scale of 1 to 76. We could get the call at any given moment to fly via air ambulance to UPMC Children's Hospital, Pittsburgh, or Texas Children's Hospital, Houston for his liver transplant. Due to this imminant possibility, our financial needs have increased. Between pre and post transplant care, we will be staying in Pittsburgh or Houston for several months. Rowan's medications and vitamins are numerous. This disease creates dangerous vitamin deficiencies for healthy growth, as well as pre and post transplant medical complications, to include rejection issues for the donor liver. Because of this, Rowan will be on rejection medication the rest of his life, and will need to make several follow-up visits over the months and years. There are also expenses associated with assisting a potential living donor, especially if they do not have adequate insurance. Follow up care is critical, for both Rowan and the living donor. Both will need to stay near the hospital for an extended period of time for follow up care. Background: At 9 weeks old, Rowan was diagnosed with Biliary Atresia, a rare childhood liver disease where the bile ducts within the liver were not properly formed. The bile ducts become inflamed and blocked soon after birth. This causes bile to remain in the liver, where it starts to destroy liver cells rapidly and cause cirrhosis, or scarring of the liver. The liver swells and increases in size distending the belly making it extremely uncomfortable. Kasai Surgery: Rowan, born August 31, 2018, had his first surgery, the Kasai, at 10 weeks old. This operation acted to buy him time, the time he needed to grow bigger and stronger as he awaits a liver transplant. He has had countless blood draws, multiple hospital stays and doctor visits for infections and internal bleeding, and a long list of daily medications and vitamins. In his first year on earth, he has endured more than what most people go through in a lifetime, while teaching those around him what really matters most. To quote a famous musician, "It's only the giving that makes you what you are." Complications: Rowan has had bouts with ascites, varices, and portal hypertension, all ramping up his need for a liver transplant. This disease is insidious and can turn on a dime. The Kasai surgery is basically failing, and decisive action is imminent. Action: We are working with UPMC Children's Hospital, Pittsburgh, the leading pediatric transplant hospital in the country. They do both living as well as cadaver donors. We are also listed with Texas Children's Hospital, Houston, where they primarily do cadaver donors. This greatly increases Rowan's chances of getting a liver transplant. We also have excellent primary care with our doctors in Plano and Dallas Children's Hospital. Mounting Expenses and Needs: Although we have insurance, there are copays, deductables, out of pocket expenses, medications, vitamins, living donor expenses, airfares, hotels, meals, childcare, travel and living expenses in Dallas, Houston, and Pittsburgh, as well as the costs of follow-up care over the years. The transplant and recovery time, as well as follow up care, will run countless thousands of dollars. We will have extended stays in Pittsburgh or Houston, depending on where the call comes from, while needing to maintain our home in Dallas. We will need to return to our transplant hospital for follow up care for at least two years as long as Rowan remains stable. Your financial gifts, love and prayers are much needed and appreciated. We are also looking for something even greater: Anyone willing to be a living donor to save Rowan's life. For that, we will be eternally grateful and indebted.
Podisorder (PTLD) is one of the severe complications after pediatric liver transplantation. Epstein-Barr virus (EBV) infection is a major risk factor developing PTLD, and can lead to morbidity and even death.
HISTORY:
Rowan's Biliary Atresia, a pediatric liver disease, has progressed, as have our stress levels. Rowan is dual listed in two regions on the United Network for Organ Sharing list (UNOS) with a PELD (Pediatric End-stage Liver Disease) score of 50, on a scale of 1 to 76. We could get the call at any given moment to fly via air ambulance to UPMC Children's Hospital, Pittsburgh, or Texas Children's Hospital, Houston for his liver transplant. Due to this imminant possibility, our financial needs have increased. Between pre and post transplant care, we will be staying in Pittsburgh or Houston for several months. Rowan's medications and vitamins are numerous. This disease creates dangerous vitamin deficiencies for healthy growth, as well as pre and post transplant medical complications, to include rejection issues for the donor liver. Because of this, Rowan will be on rejection medication the rest of his life, and will need to make several follow-up visits over the months and years. There are also expenses associated with assisting a potential living donor, especially if they do not have adequate insurance. Follow up care is critical, for both Rowan and the living donor. Both will need to stay near the hospital for an extended period of time for follow up care. Background: At 9 weeks old, Rowan was diagnosed with Biliary Atresia, a rare childhood liver disease where the bile ducts within the liver were not properly formed. The bile ducts become inflamed and blocked soon after birth. This causes bile to remain in the liver, where it starts to destroy liver cells rapidly and cause cirrhosis, or scarring of the liver. The liver swells and increases in size distending the belly making it extremely uncomfortable. Kasai Surgery: Rowan, born August 31, 2018, had his first surgery, the Kasai, at 10 weeks old. This operation acted to buy him time, the time he needed to grow bigger and stronger as he awaits a liver transplant. He has had countless blood draws, multiple hospital stays and doctor visits for infections and internal bleeding, and a long list of daily medications and vitamins. In his first year on earth, he has endured more than what most people go through in a lifetime, while teaching those around him what really matters most. To quote a famous musician, "It's only the giving that makes you what you are." Complications: Rowan has had bouts with ascites, varices, and portal hypertension, all ramping up his need for a liver transplant. This disease is insidious and can turn on a dime. The Kasai surgery is basically failing, and decisive action is imminent. Action: We are working with UPMC Children's Hospital, Pittsburgh, the leading pediatric transplant hospital in the country. They do both living as well as cadaver donors. We are also listed with Texas Children's Hospital, Houston, where they primarily do cadaver donors. This greatly increases Rowan's chances of getting a liver transplant. We also have excellent primary care with our doctors in Plano and Dallas Children's Hospital. Mounting Expenses and Needs: Although we have insurance, there are copays, deductables, out of pocket expenses, medications, vitamins, living donor expenses, airfares, hotels, meals, childcare, travel and living expenses in Dallas, Houston, and Pittsburgh, as well as the costs of follow-up care over the years. The transplant and recovery time, as well as follow up care, will run countless thousands of dollars. We will have extended stays in Pittsburgh or Houston, depending on where the call comes from, while needing to maintain our home in Dallas. We will need to return to our transplant hospital for follow up care for at least two years as long as Rowan remains stable. Your financial gifts, love and prayers are much needed and appreciated. We are also looking for something even greater: Anyone willing to be a living donor to save Rowan's life. For that, we will be eternally grateful and indebted.
Fundraising team (2)
Todd and Brigette Collier
Organizer
Plano, TX
Sunni Stokes
Team member
Todd Collier
Team member
