In April 2021 we finally got answers to why Aubrey was "developmentally delayed". Initial testing all came back "normal", but finally after more extensive testing I got the call that the results were in and we finally had an answer. I felt both relief and fear. Our neurologist explained Aubrey had Malan Syndrome, that it was super rare and only about 100 cases were reported worldwide at that time. As any parent would, I immediately asked, "What will her life look like?" He replied that he really couldn't say, there was very minimal information out there about Malan Syndrome, he said my best bet was to try and find a Malan Syndrome Facebook group to connect with and ask other parents.
It's a really scary feeling when doctors can't even tell you much about your child's diagnosis. In the recent years that's continued to be the theme. Appointment after appointment I'm met with, "Malan syndrome? I've never heard of that." and then I proceed to have to inform the doctors about it.
By donating to this fundraiser you're helping the Malan Foundation put on crucial research studies so we can get more information about this syndrome. Maybe one day we can go to the doctor and they will be the ones informing us of new findings. My hope and dream is for Aubrey to be able to live her best life. We greatly appreciate everyone who chooses to donate! Thank you.
