Aidan's Angels

Aidan's Angels are the children that have lost the battle with Hypophosphatasia. The lack of knowledge and treatment or treatment centers, has already taken some of our loved ones from us. Our hearts go out to you and your family.

Connor was born May 13, 2013. Connor has been diagnosed with the extremely severe, perinatal variant of Hypophosphatasia, which is all too evident in his profound skeletal hypo mineralization and respiratory compromise. Connor has spent every day of his life in the hospital where he was born. Connor is currently being cared for at the Neonatal Intensive Care Unit of Olivedale Clinic by Dr. Klaus Leschner and a compliment of dedicated nursing staff. Although he is currently stable, Connor does require oxygen for his breathing and has special feeding requirements. Due to Connor's terrible prognosis we consulted with one of South Africa's best metabolic specialists, Professor John Pettifor, and began scouring the internet for any chance at saving Connor. This led to the discovery of an almost miracle cure. The cure is in the form of a clinical trial drug developed by Alexion Pharmaceuticals. This cure, Asfotase Alfa, has been administered to a number of patients of varying ages and varying severities of this condition. All patients have shown remarkable signs of improvement, as well as the reversal of most of the detrimental effects of Hypophosphatasia. It is currently in the trial phase in three separate facilities around the world. Asfotase Alfa is an investigational, highly innovative, first-in-class targeted enzyme replacement therapy. It is designed to address the underlying cause of HPP by normalizing the genetically defective metabolic process, and preventing or reversing the severe and life-threatening complications of life-long deregulated mineral metabolism. The early administration of Asfotase Alfa has demonstrated remarkable results in children treated in the program thus far. Alexion has graciously decided, on compassionate grounds, to send Asfotase Alfa to South Africa and fortunately, the Medicines Control Counsel of South Africa has approved the use of the drug on Connor. This is magnificent news, as Connor will begin treatment shortly, and will hopefully start showing signs of improved heath accordingly. We have no doubt that this treatment will surely save Connor's life. Our little fighter has fought bravely on through this terrible condition and all the issues that are tethered to it. In addition to this, Connor contracted a Respiratory Syncytial Virus a week after birth, and was able to fight through the major setback as well. Against all odds he recovered from the RSV, and has steadily, day by day, become stronger and more stable. He has started to gain weight, his skin color has normalized, and his dependency on oxygen has lessened. The fact of the matter is that we simply do not know what the future holds for Connor, as we embark on this relatively unmapped path as a family. We continue to hope and pray for the success of the treatment, but also have to remain acutely aware of the risks and of course, inevitable costs associated with such an experimental treatment. You can follow Connor's progress as he makes this uncharted journey. Connor's parents Sheldon and Candice wish to thank everyone for their continued support. In October 2013, at only 6 months old, Baby Connor lost his battle with Hypophosphatasia. In spite of everything Connor went through and endured he remained a fighter with a happy positive attitude. It is with great sadness that we in the HPP community mourn the loss of this precious little angel.