They have cataracts (corrected), microphthalmia, optic nerve atrophy, blindness, hydrocephalus, bilateral frontal polymicrogyria, peripheral neuropathy, and severe osteopenia. They are unable to see, speak, sit, walk, or move much at all. They both require a wheelchair, special bed, tube feedings, a ventilator, numerous medications and around the clock care.
As they got older, their medical needs became more complex.
Even though it may seem like they don’t understand what is going on around them, they most certainly do. They communicate by facial expressions and head nods. Their body language also conveys their moods and likes and dislikes.
MaryEllen loves listening to TV shows on the Ipad. Her favorites include Glee, The Brady Bunch, and pretty Little Liars. Her favorite music includes show tunes and anything Disney. She enjoys being right in the middle of conversation. She loves being fussed over and enjoys having her hair done in fancy braids.
Kevin likes to listen to Wild Kratts on his Ipad. He enjoys having stories read to him. His favorite music is anything in the Country genre but he especially loves Taylor Swift. He delights in other’s misfortunes and will laugh hysterically if you have a sad story to tell.
They both have very clear dislikes as well. When MaryEllen is resting, she yells if anyone is talking near her. Kevin loves to go but hates to stop! That goes for red lights and stop signs as well as stopping to chat while out and about.
Even though they both have many disabling conditions, they are not very different from people their age.
MaryEllen and Kevin are the oldest known people in the world with Warburg Micro Syndrome. We don’t know what the future holds so we take each day as it comes.