This is Hudson and Boden

Hi I am Ashley! I am the mamma of two beautiful twin baby boys! Born at just 33 weeks and 3 days. These precious little beans came into this world in January! They spent 2 months in the NICU, NICU life is no joke… my heart goes out to all families who go through that. A week after the babies were born one of the NICU Dr’s suspected something might be “different” about the boys and was concerned they had a syndrome. He noticed the boys have lower set ears, different eye placement, bending in the fingers and hand differences. Later that week we did a ultrasound on the boys and found fluid on their head. This triggered the Dr to do some genetic testing, so we sent off babies blood, mom and dads to a lab for tests. When results came back the geneticist called and confirmed the babies did have a syndrome, a very rare one. It’s actually called a Ulta-rare genetic syndrome. The diagnosed syndrome of the babies is called Frank-Terr Harr Syndrome. Very few cases about 30-40 are reported worldwide in the medical literature. The dr’s have told us they are pretty sure these boys are the first set of TWINS with it. With such rare diagnosis the Dr’s have said they don’t know much about it here in the US. All we can do is follow the symptoms and watch what the syndrome can do to their bodies. I know I am late to the journey, the documenting and the awareness.. but life has been crazy trying to navigate being a first time mom, let alone TWINS, and also trying to navigate all the Dr apts, home health visits, and specialists apts. These beans are now 6 months old (corrected to 4 months) but I am ready to tell the story of what our 6 months have been like, and hopefully people will follow along as their journey and story continue. #twins #nicubaby #raregeneticdisorder #raregeneticsyndrome #frankterrharr