Sandra’s Story

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Sandra Russell is a mother of two boys, ages 22 and 18. It’s no wonder she’s tired after raising two boys, with her husband Gordon, and co-owning and running a chain of retail stores. But her fatigue was more than the norm, says Gordon. “The first noticeable symptom was her hearing loss, and she had trouble keeping up with the busy pace of our life. I became frustrated with this as I felt like I was always having to remind her of the tasks she was supposed to be doing.” That was in 2001. In October of 2004 a seizure in the midst of a hearing test led to finding abnormalities in an MRI of her brain.

Sandra and Gordon were fortunate to have access to Boston hospitals and doctors and it wasn’t long after her first seizure that Sandra was diagnosed with MELAS, a progressive neurodegenerative disorder associated with Mitochondrial myopathy. This only confirmed what Gordon had suspected after his many nights of searching the internet and finding many of Sandra’s characteristics and symptoms matched with a MELAS diagnosis. This track even landed Gordon in the hospital out of exhaustion; the very thing his wife had been suffering from. Today Sandra “goes about her limited (but productive) routine with enthusiasm and commitment,” says her husband, who adds, “It is difficult on us because our boys have been thrust into the role of parenting their mother, and I have lost my partner and my spouse.” Sandra’s brain remains, “under daily attack and she has suffered significant cognitive impairment,” says Gordon. But, he adds, “the blessing here is that, Sandra does not fully appreciate or understand much of what has happened to her. She is entirely focused on what she CAN do and is not concerned at all with what she cannot do.”

This new lifestyle has forced the boys to mature beyond their years while Gordon accepts the foremost challenge of keeping Sandra safe. She needs to be reminded to take her medicine, eat meals, stay properly hydrated, and get adequate rest. Getting through the next day is the future for the Russell family. Gordon says he, “grabs the joy where it can be found and focuses on the positives of the situation” while he hopes and prays that our children will remain asymptomatic.” Gordon also finds solace in the old saying that applies so well to Sandra’s condition, “you don’t know what you don’t know.”