Get to know the Esposito family – Dave, Elise, Kiera, and Keaton!
Find out what the past year has been like in their lives with this week’s Family Friday.
Every week, a partner-family shares what’s been happening in their lives over the past year. You’ll get a glimpse into living with Sanfilippo Syndrome through hearing family’s personal perspectives and words.
The Espositos live in South Carolina. Keira was diagnosed with Sanfilippo in September 2015.
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?
The past year has been tough, to say the least, primarily due to the pandemic. Although Keira’s hyperactivity has decreased dramatically over the past couple of years, she still remains extremely restless and cannot stay in the house for more than a couple of hours at a time.
With everything shut down for an extended period, it became extremely challenging to find places to go and to keep her from becoming extremely agitated, especially during the warmest days of summer when it wasn’t safe to have her outside in the heat for very long.
Keira has always thrived on stimulation and being around others, so being at home and away from others so much during the pandemic robbed her of that stimulation.
We are convinced there was also a rapid decline in many of her skills as a result of this. Loss of skills is almost a guarantee with Sanfilippo, but it likely happened at a much faster rate during the pandemic.
What is your child like today, compared to when they were diagnosed?
The bright spots over the past year have been that we have become even more appreciative of when we’re able to go out on adventures with Keira, and extra thankful when she is able to spend time around people outside of our family. The decrease in hyperactivity and more time in the house has also meant more snuggle time with her than we’ve ever had before!
Another bright spot over the past year has been virtually connecting with a couple of newly-diagnosed families. One of these families was able to come visit us last month; we absolutely loved having 5-year-old Victoria’s energy and sweetness here.
When Keira was diagnosed, she was still using short phrases and many words. She lost these words almost completely by age 7. At diagnosis, she was an absolute tornado, with an unimaginable level of hyperactivity. Today, she can sit still for long periods of time, although she still loves to pace and still experiences a lot of restlessness.
Although we rarely have an “all-nighter” anymore, her sleep continues to be disrupted most nights of the week, although for shorter periods of time than it was at diagnosis.
Her mobility is still very good, but her balance is not as good as it was at diagnosis, and she almost never runs anymore, which used to be all she did to get from point A to point B at diagnosis!
Her contagious smiles also stopped coming as easily about 1.5 years ago. We miss these radiating beams of sunshine more than anything. The relative rarity of them has made us relish each one we get that much more now.
What is one thing people would be surprised to know about living with Sanfilippo?
How heavy an almost 70-pound child feels when they don’t want to be lifted, and how little sleep we actually get.
Some might also be surprised to hear that we are able to find some positivity in each day, despite the weight and magnitude of the diagnosis. There is always something to cherish in each moment we have with Keira.
