DANIEL HALL suffers from Friedreich’s Ataxia, an incurable genetic, progressive disease (see: www.ninds.nih.gov and search Friedreich's Ataxia). He is wheelchair-bound and cannot move any part of his body independently, relying on carers for everything. He needs to be lifted out of bed, to be fed, helped to use any equipment, even the phone or computer. He suffers from frequent muscle spasms and often excruciating joint and back pain that stops him from sleeping through the night. Many nights he gets no sleep at all.
The ataxia has now progressed to where it has led to deformities and severely compromised heart function. FRIEDREICH'S ATAXIA ( FA) has caused Daniel cardiomyopathy, a progressive heart disease, causing shortness of breath, and debilitating irregular heart rhythms and heart failure; these symptoms and lack of proper oxygen exchange in all cells of his body caused by FA result in profound exhaustion. Daniel also has Type 1Diabetes requiring 4x daily insulin injections and constant monitoring of food. Daniel attends innumerable hospital appointment to monitor his condition but they do not offer hope of improvement in his symptoms.
It has got to the stage where Daniel's speech has deteriorated which is having a major impact on every aspect of his life. Any improvement of this difficult life would mean a lot. Any ease of his condition would be a great improvement of his quality of life.
Stem cell treatment has helped people suffering from ataxia. It is not a cure but it offers a respite from the symptoms . It can improve heart functioning, speech clarity, fine motor skills and reduce exhaustion. It could significantly improve Daniel’s quality of life. Since 1997, a number of countries have been offering stem cell treatment but currently, not the UK. China has been the pioneer in stem cell treatment both in research and hospitals offering this programme ( see: www.beikeboitech.com ). Return air fare for Daniel and his carer & 6 weeks in hospital for the whole package of treatment would cost £35,000
Daniel's history: The at first minor problems with movement in Daniel’s childhood kept increasing and by age 15 he needed a wheelchair permannetly. Daniel was accepted by Sussex University to read Economics with Spanish and by this time he was fully dependent on a full-time carer.
After obtaining his degree, Daniel lived in a council flat in London modified to his needs. He was now suffering additionally from heart failure and diabetes. Nevertheless, he kept active: exercising in water in order to alleviate excruciating spinal and muscle pain, using his standing wheelchair to relieve the pressure and prevent his feet becoming irreversibly deformed & to reduce further deterioration of his spine.
Daniel is writing a book about his experiences and taking acting classes.
STEM CELL APPEAL: We are launching this appeal to fund Daniel’s treatment.