Bretheren I would like to Start this initiative to help a baby with a potentially fatal disease. Here is some info to read on the matter. I am meeting with the mother tomorrow at the Neo natal unit of the hospital to get further details. Particularly bretheren in USA. Maybe you can help them. Hypophosphatasia (HPP) is a metabolic bone disease so rare it occurs in less than one in a 100 000 pregnancies. So when Connor Edmonds was born on 13 May his parents’ initial joy turned to despair. They were not even allowed to cuddle their child because the disease causes bones to become extremely brittle. This motivated them to fight for their newborn son. Connor’s mother, Candice said, “Connor has spent every day of his life in the Netcare Olivedale Clinic. We were initially under the impression there was no cure.” Specialist and medical director at the Centre for Metabolic Bone Disease and Molecular Research, Dr Michael Whyte said, “He is being cared for by Dr Klaus Leschner and a complement of dedicated nursing staff. Connor is in a stable condition but requires oxygen and has special feeding requirements.” The infant’s father, Sheldon said, “We consulted metabolic specialist Prof John Pettifor and began scouring the internet for information and facts about the disease. “This led to the discovery of a near miracle cure in the form of a clinical trial drug which has to date been administered to 11 children of varying ages, with varying severities of the condition. All the patients not only showed signs of getting better, but also of the effects of HPP being reversed.” He said the drug was in a trial phase in three facilities around the world and luckily, after a long process Connor was accepted into the clinical trial. Candice said, “They have confirmed that they are willing to cover all the clinical trials along with travel costs for myself and Connor to the US, and lodging. However, due to regulatory red tape, they have also indicated that they cannot provide assistance with his non-trial specific costs like a neonatal intensive care unit bed, oxygen and paediatric visits whilst in the United States. Due to Connor’s state of health the general care would be in the form of a three month in-patient stay at the Neonatal ICU facility at the Children’s Hospital of Pittsburgh.” The desperate parents said their medical aid had declined requests for an assurance to the company conducting the trial that general care would be covered while abroad.
Posted on: Mon, 19 Aug 2013 10:31:09 +0000