Remei was born a year ago with what initially looked like what the paediatrician described as “severe port wine stains”. As the excitement of a newborn baby girl quickly dimmed with the “why?”, even bigger concerns were raised by doctors as this was not seen by them ever before.
Remei had to undergo brain and abdominal Doppler scans and a 24-hour EEG to rule out immediate concerns to related syndromes. She was healthy and strong so we had so much to be thankful for, but the “whys” did not disappear.
After many consultations and self-research decided to reach out to Kelly at Rare Diseases SA who put me in contact with an amazing organization called CMTC-OVM which is a Vascular Malformations organization in the Netherlands with members worldwide having any kind of vascular malformation.
The support I have received as a worrying mother has been tremendous and I have become a patient advocate to support my daughter in this emotional life journey ahead of us.