The Beginning October 25
Dear Friends of Grace,
David and I have had an unfortunate discovery about Grace. It is clear to us that she has a disease called Rett Syndrome. There is a bloodtest that will confirm that the gene is in fact present but results won’t be available for another three weeks. If we were not certain that Grace had this disease, we would not be writing to let you all know. Rett Syndrome is a rare neurological disorder that occurs mostly in girls.  The prognosis as I’ve been told by her pediatrician is “terrible” and the effects are devastating. It appears to be severe with Grace as new symptoms appear every couple of weeks. There are varying degrees of the disorder and Grace’s appears to be fast moving and aggressive from what I understand. (more…)