L❤ve For Lexie

Hi  We are Megan and Adam from Sydney, Australia. We are the parents to two amazing little girls Imogen & Lexie.  On Wednesday 1st June 2016, just two weeks prior to Lexie’s first birthday, our entire world was turned upside down when we finally received the news that Lexie had been diagnosed with Smith Lemli Opitz Syndrome or SLOS.....an extremely rare genetic condition to which there is no cure.  People who have SLOS are unable to make enough cholesterol to support normal growth and development both mentally and physically.  There are approximately only 12 cases in Australia...Lexie is currently the youngest. With the right medical care a person with SLOS can experience a normal life expectancy, although independent living is unlikely due to mental retardation.  Sadly, children with the most severe cases often die just a few months after birth.   Our gorgeous Lexie needs constant consultations with doctors, specialists & early intervention therapists, equipment and aids to help her development such as a supported walking frame, orthopaedic splints and strapping to name a few. She also requires cholesterol medication....a daily necessity to keep her healthy and alert, alleviate her jerky movements and assist in behaviour regulation. To help us cover some of the costs for the services and supplies that Lexie needs to develop and thrive we have set up this page.  Whatever you can do to help our family would be greatly appreciated.  Thank you to each and every one of you and please find links for SLOS at the bottom of our page.  Megan & Adam

http://www.smithlemliopitz.org/smith-lemli-opitz-rsh-syndrome-overview/

https://en.wikipedia.org/wiki/Smith%E2%80%93Lemli%E2%80%93Opitz_syndrome

https://ghr.nlm.nih.gov/condition/smith-lemli-opitz-syndrome http://

www.youtube.com/watch%3Fv=ntBlTMSzFoE&sns=em%5C