Gavin's story

By Gavin, Williams syndrome, United States, February 23, 2021

Love Doesn't Count Genes

Gavin was born full term at 6lbs 3oz he was little but healthy at birth! Gavin was little and just struggled with eating and gaining weight. Gavin started becoming very fussy when eating so our GI specialist determined he may have a milk allergy and suggested Puramnino formula (very expensive) this made such a difference in Gavins life, so we thought things would start getting better.
We noticed at around 2 months old that Gavin wasnt smiling. Then at his 2 month check up our pediatrician was concerned about Gavins weight and height.  This is when our journey started. Gavin continued not to gain weight or grow in height. He had an MRI, went to a  neurologist,  had lots of blood work, and started PT but still no growth. Finally at 5 months Gavin smiled but we knew there was something different about Gavin!  Our pediatrician ordered a microarray test which is a genetic test. On January 15th we got the news, Gavin has Williams syndrome.  It's a rare genetic disorder that effects 1 in 10,000!
Its was a lot to process with lots of questions  and LOTS of crying.   This disorder can cause heart problems in 75% of children, high calcium which causes kidney stones and sometimes eye and hearing problems. So far Gaivins kidneys are clear and he has no heart problems!
  Gavin may struggle with many things in his future as far as learning and developing. He will most likely always be behind his age group, but hopefully there will be no health issues! (This would be the biggest blessing) Gavin is very happy and healthy at this time and we hope to keep it that way! 

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