HCU Heroes – Eirean’s Story

Eirean’s Mom, Jessica, reached out to me and asked me to share her story.  She was diagnosed with classical HCU at age 5.  She had her lenses removed at age 7, and is partially sighted.  Eirean has had a difficult time coming to terms with her diet & meds to the point that they have now taken her completely off the restricted diet.  She is taking Betaine alone to see if that will help her.  She was also diagnosed with ASD & has learning difficulties.  Jessica tells me that Eirean doesn’t really understand the disease because nothing has happened to her so far.  Her levels are usually between 120 and 150, so her doctors have increased her Betaine dosage to 10mg in an attempt to lower her levels.  Her parents are hopeful this will be enough!

I’m thrilled to dedicate one of my 2014 Boston Marathon miles to Eirean!