In 2006 this spunky little red haired girl was born with some unusual physical abnormalities, clubbed feet, fragile skin, weak muscles and joints. It wasn’t until she was 4 years that the diagnosis of Loeys-Dietz syndrome (LDS) was made. LDS is a connective tissue disorder similar to Marfan Syndrome with several features which sets them apart. At the same time it was discovered that she also has heart issues which will need be addressed surgically within the next couple of years.
When I first heard about Nevaeh and this rare syndrome I wasn’t sure what to expect. I was shocked to hear that she didn’t walk until she was 3 years and in just 6 years has already undergone numerous surgeries and dozens of other medical procedures. Yet this child was far from timid, quiet and fragile. Her grandmother was right, her spunk spun me into circles, not only did her fiery personality match her gorgeous hair but she had this uncanny fluidness and had absolutely no qualms in front of the camera. It was an absolute pleasure to work with this lovely little girl who not only stole, but humbled my heart. We found a special location full of magic, enchantment and love to create a whimsical dream for her images.
When Sandra Topper (Nevaeh’s grandmother) learned about the rarity of this syndrome and that there were no associations or organizations in Canada, she and two other families in Montreal pulled their time and resources together to launch The Loeys-Dietz Syndrome Foundation of Canada. Sandra indicates that this syndrome is very rare and with no cure, but with more awareness and resources – better medical management will ultimately improve life expectancy.
I hope this little girl will capture your heart – please donate, her grandmother says there are 2 ways to give and donations to either will result in a tax donation receipt.
For donations please visit:
1. Sandra Topper’s Tribute Page through The Hospital for Sick Children at http://my.e2rm.com/
2. Loeys-Dietz Syndrome Foundation Canada at http://www.loeysdietz.org