Jenny's Journal
From: “Smith, Dianne” Dianne.Smith@mpls.frb.org We’re finding out that a bone marrow transplant is different from most other medical procedures. You don’t just slowly get better as time passes, it is more like a rollercoaster ride with many ups...
Alexander's Hope
By Rebecca Paley Poughkeepsie Journal In some ways, Alexander Skojec is like any other infant. He babbles and likes to play patty cake. But Alexander — who was diagnosed with a serious disorder that makes his future uncertain — is very different from most children. In...
Alexander's Hope
From the Times Herald-Record: Wednesday, May 10, 2000 West Park: Bill Skojec’s son has a genetic disorder that’s so rare, few doctors have even heard of it – yet the father still has hope. By Jeremiah Horrigan The Times Herald-Record...
Alexander's Hope
From the Press & Sun Bulletin: Sunday, August 13, 2000 Father struggles against time to save son from disease BY MARY ESCH Associated Press HYDE PARK — Bill Skojec gates into the sparkling eyes of his wispy-haired son with the intensity of someone absorbed in a...
Damian and Jesse-Rose
What was our diagnosis MPS I or Mucolipidosis III?Our gorgeous children have had symptoms from birth. Damian has had 2 operation on his fingers to release the tendons and Jesse-Rose has had 1 operation. Damian has also had an operation for grommets due to glue ear and...
