I am a mother and Occupational Therapy Student, for 9 years my daughter, Heidi or Doodles, had the general diagnosis, given when they don't really know what's causing disability in an individual of 'Global Developmental Delay', that's a pretty positive term right? 'developmental delay', the hope that she can develop and, no matter what some development would be achieved, then on 25th November 2016, around 12.21 at LRI, Genetics Department, the wonderfully brilliant Consultant Geneticist Gabriella Jones delivered the most heart shattering news any parent would hate to hear, that Heidi has NBIA (neurodegeneration with brain iron accumulation) not only that, but, Heidi has the rarest of conditions under that umbrella of NBIA which is BPAN (beta-propeller protein assisted neurodegeneration), basically, Heidi is going to suffer the symptoms of dementia, in particular Parkinsonism, her cognition will decline, she may lose her sight (likely actually), she will suffer through painful muscle seizures (dystonia) amongst other symptom. To date there is no cure, she can be treated with Parkinsons meds (L-Dopa, being common), but they also cause hard earned loss of gains in development, not as positive as 'delay' is it? This is decline.

We are raising funds for research....please give as generously as you can.