The Wisdom of Suzi and Her Gifts to the Community She Loved.
We recently lost one of our chromosome 18 family’s most active and beloved members. Susan (Suzi) Baldwin Shaffer was the self-appointed mother of the chromosome 18 self-advocates, being one of the oldest members of that group herself. She rarely missed a conference and was eager to share her unique perspective on life.
Over the years she shared some memorable observations about life as someone with 18q-. At one of the early self-advocate panels at the Chromosome 18 Registry Conference in 2004, Suzi of course had thoughts to share. One of her particularly instructive observations was that most children are like wildflowers; you just throw out the seed and they grow and flourish. But children with 18q- are like orchids. You can’t just throw out the seed--you need to take extra care and nurture them. They may take more time and effort before they flower, but children with 18q- will flower, and like an orchid will be one of the most amazing of flowers.
People like Suzi with distal 18q- have incomplete myelination of the brain. This leads to a slower processing speed. Suzi shared her observations about what this is like. She explained it was as if all the words you needed to answer a question were like clothes in the dryer. The words are all there, but they are tumbling around, and it takes a minute to be able to pull out just the right one from the jumble. Her lesson was that people need to be patient and give individuals more time to come up with their response to a question.
Being in her 50’s, Suzi had a unique perspective on maturing with 18q-. She once said that people with 18q- mature more slowly than is typical. They sort of get stuck in adolescence for a long while, then act like teenagers in their twenties by getting into the irresponsible trouble that teenagers often do. When they are in their thirties, they have finally matured and are ready to begin acting like adults.
Suzi’s ultimate and lasting gift to the chromosome 18 families was that her brain was donated to the Glenn Biggs Institute for Alzheimer’s and Neurodegenerative Diseases at the University of Texas Health at San Antonio. Although she did not have a neurodegenerative brain disease, the scientists at the Biggs Institute are collaborators with the Chromosome 18 Clinical Research Center. Suzi’s gift will allow these neuroscientists to learn things about the brain of someone with 18q- that are not knowable through MRI scans or behavioral testing on living participants. We will be able to make correlations between what is seen through MRI scan analysis and the actual structural abnormalities of her brain. By knowing more about these unique anatomical connections, we will be propelled further down the road toward treatments.
In addition to her unforgettable presence and deep-rooted advocacy, Suzi’s brain will be an enduring gift to the community she so loved.
