“I remember sitting on my kitchen floor crying. ‘Most children with this condition lead normal lives.’ My world was caving in. I was a carrier. I caused my baby to have such a horrible condition.”
‘Whatever you do, do not Google.’ Bruises didn’t warrant a trip to the doctor. My brain was boggled.’: Son diagnosed with severe Hemophilia diagnosis, ‘We face every hurdle head-on’
‘Honey, something’s wrong.’ Our baby’s skin was marbled and black. I had no idea what was going on.’: Mom’s son diagnosed with extremely rare skin condition CMTC, loves his ‘special skin’
“I’ll never forget my response. ‘I’m sure it’s just a bruise.’ At first, every test came back ‘normal,’ doctors said it was just an ‘injury.’ We were told a list of things to do and sent on our way. Until we learned it was an extremely rare condition with less than 500 cases in. the. world. How does one process this sort of rarity?! In my mind he was the most beautiful thing I’d ever laid my eyes on. My rainbow baby. But, would he be OK? I was euphoric and crushed at the same time.”
