Aug 22, 2018 Latest post:
Jan 17, 2019
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
Our first baby, Helena “Lena” Marie Burns, was born via C-section on July 13, 2018. We found out in the later part of our pregnancy that she has an incredibly rare genetic disorder called Proteus Syndrome, an overgrowth disorder caused by a mutation in an important growth gene in the body often expressed in numerous cancers. Proteus Syndrome (PS) leads to skeletal and physical deformities where one side of the body often grows faster than the other, clotting disorders, dermatological issues, brain malformations, intractable seizures, and tumors/malignancies. There are a little over 100 documented cases worldwide. Less than 5% of cases have pre-natal onset. Often, infants born with PS appear normal until 6-18 months where they start to display manifestations of the disease. Children with milder forms of PS have a 25% mortality rate by age 20. But infants with neurological involvement of PS presenting even after birth rarely live more than 1 year. Lena has extensive neurological involvement unlike any previous case and because of her unique pre-natal presentation, experts have told us she is unlikely to live more than a year and will likely be in the NICU if she survives longer for at least 2-6 months. We’ve been working with both Cincinnati Children’s and Good Sam Hospital throughout this difficult process and we’ve given her the best possible chance at life. She is being taken care of by a wonderful NICU team and will be addressed by an excellent palliative care team when the time comes. We appreciate the love and outpouring of support from our family, friends, neighbors, strangers, and the numerous people in the medical community who have participated and supported her care including Good Samaratin Hospital, Cincinnati Children’s Hospital, Starshine Hospice, The National Institutes of Health (NIH), and The Proteus Syndrome Foundation. We are truly blessed. Her life brings hope to other families of children with genetic disorders and will help aid research initiatives and potentially help find a cure for PS in the future. Please keep sweet Helena and our family in your thoughts and prayers. She will always be our little angel and has brought immense joy into our lives. We feel incredibly blessed to be her parents and we love her deeply ❤️. No matter how long her life is we will never forget her. We hope her story touches you and inspires others to be grateful for the beauty and many blessings of life.