My sister, Ruby’s mom, provided the following information about Ruby’s condition.
Ruby is 13 months old and was born with a rare genetic condition called Neonatal Marfan Syndrome. Marfan’s is a connective tissue disorder that affects the entire body in various ways. Children with Neonatal Marfan’s are affected more severely than someone with typical Marfan’s. Currently, Ruby’s biggest hurdle is the condition of her heart. She has a severely dilated aortic root, her tricuspid valve is mildly leaking, and her mitral valve is moderately to severely leaking. The mitral valve is causing regurgitation into the left side of her heart and it’s causing it to enlarge, putting pressure on her lungs. To put it simply, Ruby has congestive heart failure. Since birth, Ruby’s cardiologist has been vocal about the complications that could occur with performing surgery but with hopes that the older she gets, the likelihood of those complications decreasing slightly. Well, last week, her cardiologist told us that, because of Ruby’s worsening scoliosis, that he and the team at children’s would not recommend surgery but to do comfort care until she were to pass away. That was such a huge blow as we didn’t know that surgery could be taken off the table. The next day, her cardiologist called me and said that he’s not taking surgery completely off the table and that after her ortho appointment for her spine, the team at Children’s would revisit the idea. As her mother, I’m not comfortable with them “considering” Ruby for surgery based on her spine. If she doesn’t have surgery, she will inevitably die. I know that doctors at Boston Children’s have successfully performed heart surgery on a baby with neonatal Marfan’s and she is thriving!! They also specialize in Marfan’s at Boston so that’s where we feel she needs to be for specialized care. Adam and I are so overwhelmed by the love and support from everyone and we thank you from the bottom of our hearts. We know that God is ultimately in control but we feel He has put this sweet and tenacious child in our lives for a purpose.
DonationsSee top donations
- Lauren Felton
- Morgan Blaylock
- Denise White
#1 fundraising platform
More people start fundraisers on GoFundMe than on any other platform. Learn more
Expert advice, 24/7
Contact us with your questions and we’ll answer, day or night. Learn more