Our daughter, Caroline, is three years old and is a very bright and vibrant little girl. She was diagnosed with Loeys-Dietz Syndrome (LDS) when she was five months old. This is a rare genetic disorder with a growing number of diagnosed individuals worldwide. She has been through more illnesses and seen more doctors in the past three years than most people will experience in a lifetime.

Caroline has undergone multiple surgeries due to intestinal mal-rotation, rupture of her spleen, a broken arm, ptosis (drooping eyelids), and hernias. She has a mild aortic aneurysm, which is monitored closely by her cardiologist. When this aneurysm enlarges to a very specific size, she will undergo open-heart surgery to replace a section of her aorta. Caroline also has a seizure disorder, which is unknown at this time as to whether or not it is a symptom of LDS.

Although it may be on her own schedule, Caroline is achieving new developmental milestones every day. She recently began preschool at Sun City Elementary; and within the past few months, has become quite the little ballerina! Despite all the challenges and obstacles Caroline has had to face in these past three years, she is a very happy, outgoing three-year-old who doesn’t let anything stand in her way.

Loeys-Dietz Syndrome affects all the connective tissues in the body resulting in cardiovascular, skeletal, craniofacial, and gastrointestinal problems. Although new discoveries are made everyday, little is known about this condition, as it was discovered just seven years ago. With research underway, we are hopeful that more and more information will make it easier to cope with all the symptoms of this disorder. Your participation and donations will make this dream a reality for many individuals, especially our daughter, Caroline.