Hannah Anderson-Marshall just celebrated her 12th birthday. She courageously fights against childhood dementia, a devastating neurodegenerative disease that affects her cognition, intellect and memory. Hannah was diagnosed at the age of 10. Her case, which involves extensive brain atrophy, is both unique and complicated. Her parents, Rachel Anderson and Elijah Marshall, along with her younger brother Benjamin, navigate the emotional and practical implications of this severe illness.
Hannah goes to Gralee School, a special school for kids with special needs located in Leeton. Like many families battling cancer, life has dramatically shifted for the family since her diagnosis, and both parents have shared on social media the emotional burden they carry. Almost half of the children diagnosed with dementia do not live past age 10. Shockingly, nearly 70 percent will not live to see adulthood at 18. These statistics cast a long shadow over Hannah’s family as they strive to create meaningful memories during this challenging time.
The Journey of Diagnosis
Dr. Peter Schofield, engaged in biomedical research focused on childhood dementia, says there’s confusion and complication around its diagnosis. “In the childhood dementias, there are a bunch of very rare genetic mutations that result in deficits in nerve cell function in the brain and that causes the dementia,” he explains. This individual specificity in each case is usually what makes early diagnosis difficult.
Rachel Anderson remembers the day they knew something wasn’t right. “There were things that she used to be able to do that she just didn’t seem to be able to do anymore,” she said. As worries started shifting, other people started seeing changes in Hannah’s demeanor. “Then other people started noticing and saying there’s something not quite right with Han,” Rachel added.
Lizette Taylor, Hannah’s teacher at Gralee School, has seen the effects of Hannah’s condition on her quality of education first hand. “It got to the point where we couldn’t really teach [Hannah] new things in school because it wasn’t fair … to have to expect her to remember things that were brand new,” she stated. The school’s willingness to modify its approaches — to still teach earlier lessons, but in novel ways that make room for Hannah’s unique acquisition of knowledge — is commendable.
Creating Lasting Memories
Even with unforeseen complications Hannah’s family is still focused on creating unforgettable experiences. Their favorite memory from their recent trip to Uluru. Plus, it checked off a bucket list item that Hannah dreamed of doing for a long time. Rachel reflected on this opportunity, stating, “To have that dream for our family, to be able to make that dream happen for her, it’s memories for all of us.”
In addition to their advocacy to protect Hannah’s cognitive abilities, Lizette Taylor has adopted some innovative teaching methods. She told me that with making the memory book, that’s been the most therapeutic. It captures not only images but narratives that others can go back and reference and read. This impressive tool provides Hannah the ability to interact with her former self and re-establish a connection with memories that would have been lost forever.
While Hannah’s education and family experiences continue to be marked by joy and grief, her resilience shines through. Yet every week, her parents are forced to face the brutal truth of their situation. Elijah Marshall shares his poignant thoughts: “Every once in a while [you] just go, you’re not going to do that or you’re not going to see that, like being able to celebrate HSC with her … walking her down the aisle.”
Support and Recognition
Educators such as Lizette Taylor are doing remarkable things every day. Most recently, she was awarded the Minister’s Award for Excellence in Teaching for her stellar work with children who go through many of the same hardships. Her dedication to seeing students like Hannah thrive in an environment that understands their condition leaves an inspiring mark on the community.
The Anderson-Marshall family has become tireless advocates for increasing awareness of childhood dementia. Most importantly, they hope to raise awareness about this uncommon, yet devastating condition that affects so many families across the globe. They do their best to stay grounded in making memories and enjoying each day together, even with the unknown future hovering over them.
