Get to know the Byers family – Tim, Valerie, Will, and Samantha!
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 families’ honest and insightful personal perspectives.
The Byers live in Texas. Will was diagnosed with Sanfilippo in March 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?
It has been a challenging year as we have worked to balance mitigating Will’s risk of COVID-19 with the need to maintain his skill level. We have been fortunate that Will’s school has opened with proper safety precautions and that children with special needs who are unable to do remote learning have the opportunity to work with their teachers and therapists. However, school has been one of our few “normals.” We try to reduce our risk profile by staying home or only doing outside activities. Will has A LOT of energy and many of the activity centers or restaurants he enjoys are not options for us right now, especially since Will is unable to reliably wear a mask.
But we’ve rallied in the challenge, working to find new, outdoor, open spaces that Will and his little sister can enjoy. The real blessing is that Tim has been able to work from home during the past year. Not only is this important as it further helps reduce risk to Will, but it means that we have enjoyed so much time together as a family. Having Daddy home means that he’s gotten to have so much more quality time with Will. And more time together is the biggest blessing for which a Sanfilippo family can ask.
What is your child like today, compared to when they were diagnosed?
We are so thrilled that in the nearly 6 years since diagnosis, Will has retained his sense of joy. He is still a happy and active little boy who loves playing outside and eating pie. However, he has lost most of his verbal communication and that has been very difficult as parents. We miss his sweet voice as he asked questions, sang songs, invented stories, and told us he loved us. We allow ourselves to grieve the skills that he has lost but we also focus on the blessings of each day.
What is one thing people would be surprised to know about living with Sanfilippo?
There is never any down time. From the moment Will is awake to the moment he falls asleep, we have to be on our A game to keep him safe, stimulated, and entertained. Due to the cognitive effects of Sanfilippo, he has neither impulse control nor a sense of safety and cannot be left alone for one second. We are so fortunate that he is still so energetic and mobile, but as caregivers, the level of physical and mental energy necessary for his care is daunting. Due to the pandemic, we don’t currently have a respite worker and are rarely able to get breaks from caregiving. We do our best to support each other as parents and partners, but it is no small task.