Who We Are

I’m a mom/wife/sister/friend/aunt/daughter/niece/granddaughter whose life has been turned upside down.

Quinlan was born on August 29, 2014. After a normal (painful) labor, he seemed to be relatively healthy, except for tense muscle tone in his extremities. At one day old we were transferred to a hospital in Boston to do an MRI of his brain because of this. After a couple days in the NICU, they determined there was nothing major going on and we were on our way home. Early intervention started to come and get him stretched out, however, we soon realized he was a bit developmentally delayed and he had microcephaly (a small head).

He experienced his first known seizure on New Year’s Eve 2014. This led to 28 days at Boston Children’s Hospital where he was started on three seizure medications and received a feeding tube. We came home for 16 days when he got RSV and it was back to Children’s. After spending another nine months in the hospital with more seizures, more added seizure meds, respiratory issues, a g-tube placed (a feeding tube directly into his stomach), a trach, continued developmental delays, body temperature fluctuations, and too many pokes and prods to count, my son was diagnosed with a very rare genetic disorder with no cure and, at the time, little to no research available. This disorder is a mutation on the Brat1 gene. At the time of his diagnosis, Quinlan was the seventh known diagnosed in the world. Because my husband and I are both carriers of this genetic mutation, which we found out after his diagnosis, there is a 25% chance that each of our children will have this disorder (the only part of science I ever remembered from high school was the punnet square, which comes in handy when understanding this aspect of genetics!)

On November 12, 2015, we were able to bring Quinlan home again and he was able to live with us for over a year until his passing, suddenly, on January 30, 2017, at the age of 2 and a half.

Our journey through this “abnormal” life involving doctors, nurses, and medical terminology (which quickly become part of our daily vocabulary) has continued even now, years after his passing. 

I enjoy talking about my son. Sometimes it’s easier than others…sometimes I laugh and smile, other times I cry and can’t speak. I never want to shy away from sharing what this journey has been and continues to be.

In 2018, we went through IVF with PGD and PGS testing, and were so lucky to bring Quinlan’s little brother, August, into the world in December 2018. Raising a child after loss is scary, beautiful, sad, and joyful. Another aspect of living the life of a bereaved parent.