Buried deep in a year's old Facebook post I found her asking a premie group: Does anyone else have a child with a diagnosis of UBE2a? I immediately wrote her a message and became fast friends with her and her husband. For two years we've cheered one another's boys on and shared the triumph and the grief that come with the unknown of a rare syndrome.
When I learned that there was a Global Genes Rare Advocacy Patient Summit in their state, I swallowed my dignity and my pride and set up a fundraiser to get ourselves to California to meet them and the end results have been nothing short of a miracle for my family.
From the moment Abram and I walked into their hotel room, it was clear that these people were meant to be our family, too. Abram and I were right where we were meant to be. I didn't have to explain anything or apologize for the fact that Abram wanted to open and close their closet door a million times because from the very second we stepped foot into their lives in REAL life - our boys were interested in doing the same thing. Jackson immediately said "hiiiii" and my son ran into Kelli's arms like he'd known her his whole life and gave her the biggest hug. The boys played in the bathroom and the closet and Abram crawled right up in AJ's lap. Family is all about love and with this family, we have a bond that is even thicker than blood. Our bond is tied right up in our sons' very own DNA and I know that my life has changed forever.
Not only have they been supportive of us since we got our diagnosis but we share a similar path. Abram is two years older than their sweet Jackson but they have similar likes and dislikes. One of those dislikes being Hollywood Boulevard. Haha.
The conference itself was not what I was expecting as many of the seminars were geared more towards the medical professionals than parents who have children with rare diagnoses but regardless, I was able to gather information from the vendors at the event that may be helpful in the future (and helpful to my friends whose children have yet to get their diagnosis). It is still just a hard pill to swallow realizing that even the biggest people in the fields of rare genomes and rare disease have never heard of your child's medical condition. But, we educated people on what it is, what its symptoms are and had the cutest boys showing them that they can do anything they set their minds to.
This family gave me experiences I never thought I'd have in my lifetime from actually being in California, to seeing Hollywood and watching Abram see and hear the ocean for the first time. This trip was heart warmingly overwhelming. Seeing how this family embraces these boys and how these sweet girls took Abe in as if he were their own sibling - engaging him, playing with him, talking to him just made my heart melt. In my heart and my head all I could think about was how special and unique this family was and how much love they had to give and how lucky we were to be a part of it. At that very moment (and from here on out) we became family and I hope that as the years pass - we can visit them often.
To those who helped us make this trip by helping with our fundraiser - you literally changed our lives. Thank you so much for giving us the gift of an extended family that we will forever share an unspoken bond with. Coming home was hard but having this experience and meeting another family living and following a similar path was the best thing that has happened since Abram was born.
The more we share Abram's story - the more our UBE2A family grows and despite the fact that the tiny handful of other families we have met string across the globe from New York to Scotland, England to Australia and Ireland - I know that someday - we will ALL meet and share our boys for the sweet little miracles that they are. This is only the beginning of a life-long friendship and a new extended "family".
In addition to meeting Jackson and his amazing family - I also had the opportunity to meet two other moms who I have spoken to for years. Moms who have helped me through many a hard day and moms who are on a similar journey with rare diagnoses, epilepsy and autism. And like meeting the DeStasios, our time together was effortless and seamless - like we'd been friends forever. Sharing our stories and our children with one another over the years has been the one thing that has gotten me through many a dark night. People who don't live this life don't understand why it's important to share Abe's journey but in the end - sharing him with the people who WANT to know more has been key in understanding him better. Connecting with other families and children with rare diagnoses is the best thing that has ever happened to me. These kids have SO MUCH to offer the world and I am so proud and honored to know all of you. You are ALL my family now. I love you guys.