‘I heard 3 things when he was finally out: ‘He’s here, he’s breathing, and he has a TON of hair!’ What a joyful moment. I say moment – because the joy only lasted that long.’

“We had waited 10 weeks to see our beautiful baby on the ultrasound screen again. Do to an insurance issue preventing us from getting any scans between 20 and 30 weeks, naturally my anxiety was overwhelmingly high that morning of our 30-week scan, the morning our...
A message on Rare Disease Day

A message on Rare Disease Day

Dear CdLS Community, On this day – February 28th – the rarest day of the year, we take a moment from our daily lives to bring awareness about our community and what it means to live with a rare syndrome or disease. I had the opportunity yesterday to listen...