Crusading For Sadie

Sadie was born on April ...30, 2013. She started having seizures her second week of life. At 3 months she was diagnosed legally blind. At 4 months she was diagnosed with infantile spasms. At 5 months we were told she had cortical visual impartment and she could see light. From here we continued searching for the reason WHY, why her? After trying 8 medications and no success...we were lost for an answer. On April 14, 2014 we received a phone call that Sadie had a duplication mutation in her CDKL5 gene. CDKL5 is a rare X-linked genetic disorder that results in early onset, difficult to control seizures, and severe neuro-developmental impairment. Most children affected by CDKL5 suffer from seizures that begin in the first few months of life. Most cannot walk, talk or feed themselves, and many are confined wheelchairs, dependent on others for everything. Many also suffer with scoliosis, visual impairment, sensory issues and various gastrointestinal difficulties.
Please help spread the word about CDKL5 as there is no cure. Sadie and her CDKL5 family need your support. Please visit the website to learn more http://www.cdkl5.com/ Default.aspx
Thank you,
The Laflamme family