Allison Ruth Russcher was born on March 12, 2014, with IUGR, Loeys-Dietz Syndrome, cleft palate, and CHD. She was the bravest girl we have ever known, and won the hearts of everyone she met.
Alli earned her angel wings on January 29, 2015, after suffering complications from RSV. She took our hearts when she went, but left us with a mission to spread the word about connective tissue disorders like LDS to ensure the disease does not go undiagnosed and untreated.
What is Loeys-Dietz Syndrome?
Loeys-Dietz Syndrome, or LDS, is a connective tissue disorder similar to Marfan Syndrome that can affect several of the body’s systems, but is characterized by cardiac complications such as aggressive aneurysms. It requires frequent screening via MRI or CT to reduce the risk of complications. There is no cure, only management of the symptoms.
Why is awareness important?
Left undiagnosed, LDS patients can develop life-threatening aneurysms. Since LDS patients can develop aneurysms at a very young age, and in more areas of the body than Marfan patients, it is essential that medical professionals be educated so that LDS patients receive accurate diagnosis and are put on the correct screening regimen.
(c) 2015 Princess Alli Foundation