ALERT: Donor 3541 California Cryobank!
From a DSR Mom:
“My children have a disease called cavernous malformation disease: gene is called CCM1 (this is what all his offspring & he should be tested for). All three who have it, have active brain bleeds, and my 8 year old has had 2 strokes, now has epilepsy from the brain damage, and one child is expected to go blind eventually.
Many people live like a ticking time bomb and never know what they have with this condition so I want other families to know! Some don’t get it, some are asymptomatic, BUT if they get help at a young age it could make the difference between life and death.
I do not have it, so all our geneticists and teams of doctors have concluded it is from this donor. He in fact deserves to know he has it, even if he has no active issues.
I just want families of California Cryobank donor 3541 to know what their children may have it, or it may be an answer to some of them who are struggling for knowledge like we did for 2 years! It may help us as well to see if any sibs have it, and where/how they are progressing!”