Let me take you back a bit. To learn about my present and how it came to be, you should get the Reader’s Digest version of my past.
I gave birth to my di/di identical twin girls shortly after my 20th birthday back in 2004. They have always been VERY small but there has never been any reason to believe there is anything “wrong” with them. They struggled a bit in school and had migraines from as far back as we can remember. Otherwise, they seemed pretty healthy.
On October 15th, 2020, I got the phone call that turned my life upside down. Twin B had a seizure at school and Twin A was with her, waiting for the ambulance to come. Two ambulance rides and at least a dozen doctors later we had our answer.
Twin B had a rare genetic brain disease called Familial Cerebral Cavernous Malformations and had 2 bleeding lesions. There is no cure and so far, surgery is the only treatment. We were instructed to get her twin sister scanned to make sure she didn’t have any bleeders and we were off to the races, so to speak.
In my panic, I began to obsessively Google their diagnoses and came up with a few helpful lectures and medical articles. By far, the most helpful resource I came across when I was lost in my grief and pain, was the support of other moms who had been where I was. Their time and effort meant more to me than I can say.
About 5 months later both girls had been operated on at Barrow and we were in midst of wading through the rare disease parenting world. I have taken on the role of Chair to the Arizona Angioma Community Alliance and have made it my life’s mission to raise awareness and funding for treatments and a cure for this disease.
If you have a story you would like to share, I want to hear it! I am always looking for ways to support rare parents and their kiddos in any way I can! Guest blog posts are welcome here as we ALL have a story to tell! Email me to apply to share yours today!