BRANDON'S STORY

Brandon is a happy, fun and sweet 12 year old young man who lives with his mom, grandparents, dog and cat on the Eastern Shore of Maryland. Brandon aka “B” is non-verbal however is working hard to learn how to use his assistive technology device. He attends public school in a contained classroom.

 

He can easily become overwhelmed or excited which can cause a full blown meltdown or aggression. Thankfully this usually only happens at home. B can be mischievous but overall just loves life and his very affectionate. His favorite things to do are dance and play with his dog.

 

Born: 2011

Diagnosed: 2015

Variant type: de novo (R3070C)

Surgeries: ASD repair 2017, orchiopexy 2019

Clinical features: Intellectual disability, autism, epilepsy, non-verbal, strabismus, esotropia, hypotonia, joint laxity, osteoporosis, (failure to thrive and short stature - prior to ASD repair)

 

His mom is a founding board member of Louie’s HUWE, a non-profit 501C3 formed in 2021 to help support children like Brandon who are affected by HUWE1-related genetic conditions.