Hi Everyone, for those of you who don’t know me my name is Ciera Stewart and I have been a part of the Boutique family for almost 2 years now. Every year my husband and I run on Team NEHA in the Falmouth Road Race and this year we are once again going to be a part of this amazing race! Team NEHA has a very special place in my family’s heart and this is why….
Almost 4 years ago my life got thrown for a loop. My son, Ethan, was born and after a scary few days in the hospital we found out that he has a genetic bleeding disorder, Hemophilia A (Severe). I knew of hemophilia but we had no family history of it, so to say I was shocked was an understatement. The emotions that followed are hard to even put into words. I was riddled with postpartum guilt that felt very dark because Hemophilia gets passed down by the mother so I felt that I “gave” this to my son, I was worried as to what his life would look like, I was overcome by sadness that he would have to go through a different journey and have different life challenges then a “normal” kid, I was just absolutely heartbroken and I was scared and mad (if I’m being completely honest).
We quickly got connected with a Hematology team in Boston and we were introduced to the wonderful groups that support families of children with bleeding disorders, one being NEHA (New England Hemophilia Association). They automatically welcomed us and reassured us that all would be okay and that Ethan would have a great community helping him along his journey, they were absolutely a light that we needed in a time of darkness and uncertainty. 3.5 years later and we now know that I myself have Hemophilia A (mild) and my daughter, Ivy, also has Hemophilia A (mild). What once seemed so isolating and sad for Ethan has now turned into a family affair (minus David Stewart, my husband, he’s officially the odd man out and the rare non-hemophiliac in our house lol).
I don’t always talk about our day in and day out challenges, and If someone asks I always say we are doing great, but the reality is some days are harder than others. Ethan is on a special medication that helps his blood clot and so we have to give him a shot every other week, which he HATES, and it breaks my heart everytime. The added level of worry and advocating, explaining, teaching caregivers etc. can be overwhelming and daunting. We have been lucky and have only had a few ER visits (thanks to his medication) but what I have also learned is that we have an AMAZING community and team in our corner when injuries or bleeds happen. Between our team at Boston Children’s, that I can call on at any minute for advice, to the New England Hemophilia Association, who provide much needed education/ outings/ camp and support for our family, I know I am supported and understood.
I am hoping to raise $1,500 for the New England Hemophilia Associates so they can continue support for all Bleeding Disorder Families in New England. Any little bit helps and I would be so greatly appreciative of any donation. 🙂 While this is a great opportunity to raise awareness for the bleeding disorders community, it is also a vital fundraiser to support our programs and services. Ethan’s the bravest and most resilient little boy I know and he says THANK YOU for any support.
