From Samuel’s mom, Susan:

Our son, Samuel, is 9 years old and has a very large, inoperable, AVM-like mass in his brainstem and thalamus. Because it is considered otherwise untreatable at this time, we have decided to enter a drug trial in hopes of helping. Samuel also has a congenital heart defect that cannot be repaired because of the AVM.

Samuel, was originally misdiagnosed with a Vein of Galen malformation (VOGM) at 13 months of age. During an attempted embolization surgery when he was 14 months old, we learned that he did not in fact have a VOGM, rather a very large thalamic AVM. It took me a while to be ready to seek some support groups for people or families with AVMs, but once I researched a few, the Niekro Foundation group members were there, ready to provide support and all kinds of information and experience sharing.

Connecting with the Niekro Foundation has provided much needed support and comradery. I have learned so much from the group over the years, from others’ experiences, knowledge and research information sharing. The Niekro Foundation has also proven to be a positive experience for our son, because we are able to talk about his AVM in other terms aside from medical appointments or testing with things like the 5K race fundraiser or the unique, fun water bottle and socks he earned from fundraising. It has also been helpful to our son, who loves baseball and collecting baseball cards, that even MLB baseball players can have “a problem with their brain too.” We have also really appreciated individuals from the Foundation reaching out to check in on our son, and us, just to see how we are. It means a lot to know we’re not alone and that other people recognize this is not an easy journey.

My words of hope and advice to other survivors and caregivers is trust your gut and intuition. Ask questions. And then ask more questions. Advocate for yourself/your loved one.