Little Benjamin

To all our friends and family who have asked about little Benjamin, this is a beautiful letter written by Kristen's Father.  We have been reminded once again how precious life is and are grateful for the knowledge of the Plan of Salvation. Our prayers continue to be with Kristen and Randy and we will be forever grateful to them for allowing us the opportunity to meet him and hold him, knowing his time on this earth was so limited. It was an extremely selfless act for them to share him with the family and it truly was an honor to be in this little angel's presence.
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Benjamin Ryan was born on February 15^th at the Orem Community Hospital.  When he was born he didn’t cry but the doctors felt he was just exhausted from a very trying birth.  They thought that he would be stronger within the next 24 hours.  After 24 hours they didn’t see the recovery they were hoping for so they transferred him, for precautionary purposes up to Primary Children’s Hospital.  Within hours they had several teams working on him trying to determine the problem.  The neurologist eventually diagnosed him with Non-Ketotic Hyperglycinemia Encephalopathy.  Though the neurologist team diagnosed it the genetics team then took over, as this is a genetic disorder.  This is a very rare disorder that only happens in about 1 in 63,000 births.  It was a disorder that began at conception.  Only 2 in 250 people have a particular recessive gene along with a dominant gene (most of us have 2 dominant genes).  Then those 2 people need  to find each other and conceive a child.  And then there is a 1 in 4 chance that the 2 recessive genes hook up…and when that happens you have a child with Non-Ketotic Hyperglycinemia Encephalopathy, which is a terminal disorder.

Children with this disorder generally don’t live longer than 6 months but because Benjamin’s was so severe he wasn’t expected to live beyond Monday evening.  When he was still with us Tuesday morning the hospital felt there was nothing more that they could do so they told Randy and Kristen that they could take him home to spend some quiet time with him, but didn’t expect they would have much longer with him.  Benjamin was a fighter and wasn’t quite ready to go.  He surpassed everyone’s expectations…but he did pass away very peaceably early Friday morning February 25^th, at 12:20am in the arms of his parents in the quiet of their home.  A close friend of the  family from California who is now a mortician here in Salt Lake came to their home within an hour or so and picked up Ben and is personally caring for him until his burial. 

Randy and Kristen thank you all for your prayers and kind thoughts and for those who joined in our family fast.  The parents know that the prayers were heard.  They have also felt that Benjamin Ryan is indeed a choice spirit and know that they will one day have an opportunity to raise their special little boy.

                               

 Rick Andrus