Nevaeh's Hope for Hearts & Toes and everything in between.

In 2006 our family was blessed by a spunky little red haired girl who spins between laughter and tears (like most kids) but who also battles the fear of yet another hospital visit. We have witnessed her bravery along with so many other kids - they all deserve Gold Stars. Nevaeh was born with several abnormalities that seemed incidental at first: clubbed feet, joint contractures, hyperextension of joints, low muscle tone and pectus excavatum (chest wall that caves in). In 2010 we received the diagnosis of Loeys-Dietz Syndrome (LDS). LDS is a newly identified connective tissue disorder. While LDS may appear similar to Marfan Syndrome, there are in fact several features which differ. It is crucial that LDS patients be identified early in life in order to receive the correct medical treatment. Each year Nevaeh receives an annual MRI to keep an eye on the potential development and enlargements of aneurysms throughout her vascular system. Since LDS affects every cell at every stage of development, apart from cardiology, many people with LDS need to be followed by physicians specializing in orthopaedics, gastroenterology, respirology and ophthalmology. Nevaeh has developed strong relationships with her physicians and the clinicians at the Hospital for Sick Children, which is imperative for all children who live medically fragile lives. Since there are very few people who have been positively diagnosed with LDS most patients are followed by experts who are familiar with Marfan Syndrome. It is the potential Cardiovascular issues that make this condition quite serious. We are now aware that there are approximately 15 children in Ontario who are followed by Dr. Tim Bradley. This tribute page was created to support The Cardiology/Marfan/Connective Tissue Clinic in order to continue with the superlative care that Dr. Bradley and his team provide to children with connective tissues disorders. Even the smallest donation - means so much. Sincerely, Sandra Topper (Nevaeh's Nana).

Heaven sent our family an angel - everyday we are reminded that life is fragile - protect it, love it, enjoy each and everyday.