My beautiful daughter Roisin has a very rare genetic disorder known as CDKL5 Deficiency Disorder. This disorder is caused by mutations in the CDKL5 gene and varies broadly in symptoms and severity. Many patients have early-onset seizures that remain uncontrollable, neurodevelopmental delays impacting cognitive, motor, speech and visual function. This disorder mainly affects girls because the CDKL5 gene’s location is on the X chromosome and females have two X’s.

Now there is hope, researchers are working on a cure using gene therapy, which has been used before in other genetic disorders to great effect, and are ready to move on to the next phase of clinical trials. The problem is pharmaceutical companies have stopped funding the research, as a one-time treatment doesn’t make them as much money as keeping the patient on a daily drug regimen. So collectively us parents of children with this disorder are trying to fund the research and keep it going ourselves.

Every parent has dreams of being their child’s hero in times of need and unfortunately, I can’t be my daughter’s Knight in Shining Armor without your help.

Please help me help my daughter and all other children with this disorder. Please donate if you can. If you can’t that’s okay, please share it then. The more awareness of this disorder means more eyes on it and possibly more funding. Money should never be the only thing holding back helping sick children.