Get to know the Sink family – John, Katharine, Declan, and Zane!
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 Sink family’s honest and insightful perspective.
The Sinks live in Texas. Declan is 7 and was diagnosed with Sanfilippo in April 2018.
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 disruption to Declan’s routine was hard for him. It was extremely difficult when school transitioned to online learning. He has a limited attention span, and the lack of interaction diminished his willingness to learn and participate. His therapies (speech, physical, occupational) were put on hold for the first few months of the pandemic. He lost some of the progress he made. Just like school, therapies later went to an online format, which was ineffective. It was hard managing his frustrations. He became bored very quickly, and we could not do anything except walk around the neighborhood. No playgrounds. No trampoline park. He requires constant supervision, so it became very difficult to work. There were no breaks for us as parents. When you combine everything with the fear of Declan contracting COVID and what it could do to him, it became an extremely stressful and draining time.
It did afford us the opportunity to spend more time paying attention to Declan’s nuances, gaining an even better understanding of his wants and needs. The quarantine allowed us to become closer as a family.
Declan was also accepted into a clinical trial that may improve his quality of life. It was wonderful news and brought us all some hope.
What is your child like today, compared to when they were diagnosed?
Declan was four when he was diagnosed. He was always behind his peers, but at that time, he could say the alphabet, distinguish shapes and colors, and speak simple phrases. He was potty trained and coordinated enough to hit baseballs and dribble a basketball. He used to love puzzles and could complete one with 50 pieces without assistance.
He is now seven and has regressed so that he now wears diapers, is essentially nonverbal, and trips while walking. He cannot even do the simplest chunky peg puzzle. He has the mentality and awareness of a child under 2 years of age. He has frequent crying and screaming episodes, and he is more restless than he used to be. He paces constantly and cannot focus on anything, sometimes seeming frantic. His joints are stiffer, and his range of motion has decreased.
What is one thing people would be surprised to know about living with Sanfilippo?
There is no break because you cannot step away. It can all be very isolating.