Get to know the Wallis family – Jeff, Kelly, Abby, and Emily!
Find out what the past year has been like in their lives with this week’s Family Friday.
Get a glimpse into living with Sanfilippo Syndrome through the Wallises’ honest and insightful perspective.
The Wallises live in Texas. Abby turned 25 last August and was diagnosed with Sanfilippo in October 2017.
What has been going on in your family and for your child in the past year? What have been hard parts? What have been bright spots?
Abby has remained pretty stable over the past year. Kelly’s mom, aka Abby’s Ma Ma, passed away suddenly last March, so that turned our world upside down. Abby did not seem bothered about it (like she’s unaware), but we know she must feel it in her own way. Abby remains pretty content and happy in general though, so we are very grateful for that. She still has her same caregiver, Aly, who loves her and she loves her very much. We are also looking forward to hopefully getting together soon with family more often as COVID restrictions are lifted.
What is your child like today, compared to when they were diagnosed?
She was diagnosed in 2017, and her speech and cognitive abilities have deteriorated since then. She has fewer words and requires more help to do things now. We have also seen her have what we think are seizures occasionally. Her interests have diminished too – she is less interested in things now. Time seems to steal her physical and emotional traits. Sadly, she is slowly becoming a shell of the person she used to be.
What is one thing people would be surprised to know about living with Sanfilippo?
In our case, Abby is 25 years old, so she is a full-grown adult. This makes it more difficult because she is not small anymore. We cannot physically maneuver her as we would like or need to, making it harder to care for her sometimes. This can make her seem like a cranky old lady! However, her needs with feeding, bathing, dressing, etc. are infantile.
The other significant realization about this disease is how the Abby we have always known is slowly disappearing. We see videos of her when she was younger and are in disbelief because we don’t even remember her like that.