Thank you to everyone for visiting this page... it has been six months since Emmett passed away, and we wanted a place where we could share pictures, videos and memories of him. We appreciate any and all words you may have to share about what you remember about Emmett, how he may've touched your life... Continue Reading →

I can’t believe it’s been half a year since my last post! I keep meaning to sit down and write one (and I have started a few) but time just seems to get away from me. So for now, I’ll just share this great video Charles Schwab created about Emmett and our ongoing journey with... Continue Reading →

Thank you SO much to everyone who has ordered shirts and donated so far! =D For those who are interested and haven't ordered, there is one week left to order shirts. (Last day is April 21.) To date, we have sold over 240 shirts and raised over $11k toward Emmett's PIGA research projects! (Hurray!) Here's... Continue Reading →

We met Clement Chow at the CDG Conference we attended at the end of February, and a project grew out of our conversations. 🙂 Read more about the project the Chow Lab started for us on their blog! http://www.chowlab.org/blog-native/2018/4/6/wtdc3kqe1j8ezo4mfeems53q2of2b7  

Next week, Emmett turns two. I still remember the day Emmett was born. I went in for a routine doctor’s visit at 38 weeks, 3 days, but the doctor thought he may’ve seen meconium in my amniotic fluid, so recommended I have my c-section that very day. “Are you ready to have the baby today?”... Continue Reading →

Last Thursday, we packed up what felt like all our earthly belongings and headed down the coast to San Diego for the 2018 SBP Rare Disease Day Symposium and CDG Family Conference. (I say that because our car was packed to the brim with all of Emmett's stuff, and he comes with A LOT of... Continue Reading →

We started off the day yesterday with another blood draw – this one for something called a flow cytometry test they only process once a week. (We did a flow cytometry test when we went to Seattle Children’s Hospital, but the results came back inconclusive, so we’re hoping the NIH’s ability to process the blood... Continue Reading →

Last month, we packed up and took a trip to Seattle to see Dr. Christina Lam, who is a biochemical geneticist at the Seattle Children’s Hospital. She is also a specialist in CDGs (Congenital Disorders of Glycosylation) which we’ve found to be the broader category of where Emmett’s PIGA gene mutation falls under. CDGs are... Continue Reading →