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Hello,
As many of you know, my niece Terese and her husband Casey brought beautiful London Reese into the world February 18th. Terese and Casey describe their journey below. London is currently awaiting a new liver; a major surgery and intense recovery that will displace the family for an unknown period of time. While the family waits for word on an available liver, Casey and Terese must travel weekly to Lucile Packard Children's Hospital in Palo Alto for blood draws and regular check-ins with London's medical teams. Terese is no longer able to work away from home in order to protect London from possible exposure to life-threatening germs or viruses. Isolation from friends and family, compounded with reduced income and growing expenses, not to mention the stress and worry associated with caring for their precious little girl is monumental. Terese and Casey are doing it all on their own. They are a true inspiration, but I hope we can come together to lighten their load.
The Boughtins need our help. Please consider a donation to help defray travel, post-transplant temporary housing and a myriad of other expenses associated with caring for sweet London pre-and-post liver transplant.
Thank you for your time and generosity.
From Casey and Terese:
Meet our baby girl, London Reese. At two days old during her newborn screening, London was diagnosed with MSUD, a rare metabolic disease known as Maple Syrup Urine Disease. Children born with MSUD are lacking a specific enzyme that breaks down certain amino acids in protein. If not caught and treated, elevated amino acids can result in brain damage, neurological disorders, and death. In times of sickness or stress, London’s body works against her, releasing these amino acids into her blood, which can become toxic very quickly. This disease is so rare; it affects only one in approximately 185,000 births.
Our MSUD journey began the evening we brought London home and our family was over to celebrate. Two hours later, we received the life-changing phone call that shattered our world. We were told to return to the hospital immediately—London’s life depended on it. We checked in to the NICU. Devastation and panic set in. How could something be wrong with our perfect, beautiful little baby? The next two months were a blur. We were at the hospital more than we were home. London's specialists at Children's provided us with two options. Option One, live life with a severely restricted diet filled with constant worry, testing and caution, or Option Two, undergo a liver transplant.
Since February we have been living a life of isolation, keeping London in a bubble to reduce her risk of exposure to germs and viruses. We worry she’ll get sick, and we constantly worry about her amino acid levels. Even with our diligent care, London’s amino acid levels have become unstable, landing us in the ER, as well as extended hospital stays on multiple occasions. To protect London and provide her with the best solution for a long and healthy life, we have opted for Option Two: a liver transplant. London is now 9 months old and currently listed as “Status 1B” for a liver transplant with Lucile Packard Children’s Hospital. A new liver will metabolically cure London, providing her with the enzymes she currently lacks to break down certain amino acids in protein. We feel this is ultimately the best and safest treatment plan for her. London is also being treated as a live donor to another child in need of a liver. London can donate her liver to any child in need of a liver for whom the critical enzyme lacking in London’s body is inherent in their body. This is known as a domino liver transplant.
London is the strongest little fighter we have ever known. She is our whole world! To say this year has been tough would be an understatement, but we know God will provide for our family. Our baby girl is a true miracle, and we know He will be with her during every step of her journey.
If you would like to help assist with London’s transplant related expenses, we have partnered with GoFundMe. We are so grateful for anything you can do to help us help London. Thank you.
Meet our baby girl, London Reese. At two days old during her newborn screening, London was diagnosed with MSUD, a rare metabolic disease known as Maple Syrup Urine Disease. Children born with MSUD are lacking a specific enzyme that breaks down certain amino acids in protein. If not caught and treated, elevated amino acids can result in brain damage, neurological disorders, and death. In times of sickness or stress, London’s body works against her, releasing these amino acids into her blood, which can become toxic very quickly. This disease is so rare; it affects only one in approximately 185,000 births.
Our MSUD journey began the evening we brought London home and our family was over to celebrate. Two hours later, we received the life-changing phone call that shattered our world. We were told to return to the hospital immediately—London’s life depended on it. We checked in to the NICU. Devastation and panic set in. How could something be wrong with our perfect, beautiful little baby? The next two months were a blur. We were at the hospital more than we were home. London's specialists at Children's provided us with two options. Option One, live life with a severely restricted diet filled with constant worry, testing and caution, or Option Two, undergo a liver transplant.
Since February we have been living a life of isolation, keeping London in a bubble to reduce her risk of exposure to germs and viruses. We worry she’ll get sick, and we constantly worry about her amino acid levels. Even with our diligent care, London’s amino acid levels have become unstable, landing us in the ER, as well as extended hospital stays on multiple occasions. To protect London and provide her with the best solution for a long and healthy life, we have opted for Option Two: a liver transplant. London is now 9 months old and currently listed as “Status 1B” for a liver transplant with Lucile Packard Children’s Hospital. A new liver will metabolically cure London, providing her with the enzymes she currently lacks to break down certain amino acids in protein. We feel this is ultimately the best and safest treatment plan for her. London is also being treated as a live donor to another child in need of a liver. London can donate her liver to any child in need of a liver for whom the critical enzyme lacking in London’s body is inherent in their body. This is known as a domino liver transplant.
London is the strongest little fighter we have ever known. She is our whole world! To say this year has been tough would be an understatement, but we know God will provide for our family. Our baby girl is a true miracle, and we know He will be with her during every step of her journey.
If you would like to help assist with London’s transplant related expenses, we have partnered with GoFundMe. We are so grateful for anything you can do to help us help London. Thank you.
