Princess Allison was born on March 12, 2014. Shortly after birth it was discovered that she had a cleft palate. Combined with our families previous "marfan-like" diagnosis her cleft helped us to confirm a clinical family diagnosis of Loeys-Dietz Syndrome.
Princess Allison passed away on January 29, 2015, after suffering respiratory failure caused by RSV. She was the bravest, most beautiful little girl we have ever known.
Please visit Allison's memorial foundation, the Princess Alli Foundation, at www.PrincessAlliFoundation.org
Loeys-Dietz Syndrome (LDS)
Loeys-Dietz Syndrome is a connective tissue disorder that can affect several of the body's systems, but is characterized by cardiac complications such as aggressive aneurysms. It requires frequent screening to reduce the risk of complications. There is no cure, only management of the symptoms.
Our family had planned to travel to Johns Hopkins Hospital in Baltimore, MD in February 2015 to have Dr. Dietz evaluate Allison and provide us with a treatment and screening plan for her and the rest of our family. We were able to send valuable genetics tests in before Allison passed that will hopefully allow Dr. Dietz and his team to make new diagnosis to help our family and others with connective tissue disorders. With the support of our friends, families, and customers around the world we were able to make the trip to see Dr. Dietz in June of 2015.