Extraordinary Measures is a movie about a father who recieves news of his newborn son and toddler daughter being afflicted with Pompe - a fatal neuromuscular disease. John and his wife decide to make it their lives work to save their children. It stars Bendan Fraser and Harrison Ford and is based on the real life of John Crowley.
The Extraordinary Measures website is highlighting video stories of hope and inspiration. The video with the most votes will win $10,000 from CBS Films. Please visit and vote daily for “Reverse Rett Syndrome – Give Our Girls a Voice.
Please also visit the Rett Syndrome Research Trust Blog to read an interview between Monica Coenraads and John Crowley. Both of these tremendous people work tirelessly for their children and the families who are afflicted with their respective diseases. They give hope and inspire all of us special needs families to reach higher, dig deeper and to keep going even when it seems impossible. Many thanks to Monica for all of the amazing work she has done for our girls and all that she continues to do!