Thankfully, when they first visited Great Ormond St Hospital for Children in London the unique babies were put into the specific care of two exceptional people, one of whom was our eminent genetic scientist, Keith Hyland PhD, and the other Professor Peter Clayton MD FRCP FRCPCH; it was as a result of their collaborative work that the disease AADC as it is known today was uncovered.
All those years ago the sons of Mohamed and Hasna Tawara underwent pioneering treatment with previously untried medication and testing in the search for a diagnosis of their condition, and so became the interest of many in the medical world. Even though the twins responded well, their devoted parents were ever aware that the newly diagnosed condition was still life threatening; as a result they continued to travel the world in hope of a potential cure and also to ensure that everything possible was being done to enhance the position of their ailing sons. The unique condition of their babies demanded that they source every feasible medical opportunity in existence, ensuring it was made available to them.
Now having reached the age of 20, the inspiring twins continue to advocate the vitally important need for a correct initial diagnosis in respect of AADC, as for most cases it is a matter of life or death; sadly as we know there are tiny children who have already lost the battle and died before the age of 7 years.
Due to poor funding and lack of research over the past two decades, regrettably, little progress has been made in respect of growth and development into the possibilities of an imminent cure, even though ever increasing numbers of children around the world are being diagnosed with this life threatening, debilitating condition.
We will systematically continue in our attempts to raise vital funds for essential exploration and studies into the disease. We will also strive to increase awareness throughout the medical world for all the children who are following the pattern of the Tawara twin’s distressing plight, and for others as yet unborn, who without help, will have to do the same.