Hi, my name is Joslyn. My twin boys Colton and Stetson were born May 6, 2022. I brought them home from the hospital and then 2 days later received a call that they needed to be admitted to the NICU due to them being diagnosed with a very rare disease called Maple Syrup Urine Disease (MSUD). Maple syrup urine disease (MSUD) is a rare but serious inherited condition. It means the body cannot process certain amino acids (the “building blocks” of protein), causing a harmful build-up of substances in the blood and urine. Normally, our bodies break down protein foods such as meat and fish into amino acids. This disease will affect them if not treat by having liver transplants; I have attached a link below  https://www.nhs.uk/conditions/maple-syrup-urine-disease/ (this link will be able to explain more in-depth of what it is.)

I wanted to let everyone know that my son Stetson has finally received a liver transplant on Wednesday, June 19th. I wanted to thank you for all the prayers, wishes and love that everyone has been offering. As you know, during this time I will be in Orlando with him for the next few months due to recovery and then follow up labs when discharged. My other son Colton is home in Tampa but is also on the transplant list. These boys have been through so much the last 2 years. Each day is unknown with them, but they continue to be strong and pull through the roadblocks they have experienced. From hospitalizations, Stetson having open-heart surgery last year and so much more in between. Their journey has been such a learning experience, but they are going to be completely healed from this disease with new livers. I am asking everyone to help me walk alongside my boys however you can. We have partnered with the Children’s Organ Transplant Association (COTA) for assistance with transplant-related expenses, such as medical expenses out-of-pocket, medication costs, numerous long-distance travel to doctor appointments and requiring overnight stays. It would be so much appreciated if anyone could share this link that is dedicated to raising funds for COTA in honor of Colton and Stetson to assist with transplant-related expenses.

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.