Over the course of my daughter' s medically complex life, we added dozens of symptoms and even more questions. When we exhausted resources available to us through clinical medicine, we enrolled Adelaide in the Undiagnosed Diseases Network. For the next two years, our UDN coordinator kept us updated on any findings as science progressed. Unfortunately, science couldn't catch up in time and Adelaide passed away days before her 4th birthday. However, after donating her brain to the UDN, we finally received a likely diagnosis four years after her death.
Having a diagnosis, even post-mortem, has connected us with a community and given us the information we need for further family planning. It has helped me process some of my grief around her loss and trauma during her life. Everyone deserves the peace that comes with finding medical answers and that is why our family supports the UDN and why we are asking you to support the UDN with us.
