Get to know the Bittner family – Josh, Lisa, Luke, and Caleb!
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 Bittner family’s honest and insightful perspective.
The Bittner family lives in Minnesota. Luke is 9 and was diagnosed with Sanfilippo in October 2014.
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?
For almost two years, Luke has been having vomiting episodes. He throws up multiple times a month for no known reason. Sometimes he also cries and is completely exhausted during these episodes, often sleeping the whole day and not eating or drinking much. We have seen many doctors and have gone to the ER multiple times trying to figure it out. It is very hard as a parent watching your child suffer with no idea how to help them. Currently, we are working with GI, trialing medication to see if we can prevent the episodes or at least stop them once they start. He is also struggling to gain weight as he is throwing up and not eating a few days a month. So, he recently gained a dietitian who is helping him gain weight.
We have been staying home for a year now because of the pandemic. We don’t know how COVID would affect Luke if he got it, and we are trying to keep him safe. Shortly before the pandemic started, he lost his ability to walk without assistance from getting strep throat. He was able to walk again shortly afterwards, but it was a scary few days and enough to make us afraid of him getting COVID. He still goes to doctor appointments, outside for walks or bike rides, and tags along for drive-up order pickups, but is otherwise staying home. Which is a big change from our #MakingMemories lifestyle we had pre-pandemic.
Being home is hard, but having him home has also given us extra time with him. Instead of in-person school, he is doing virtual school. Which he needs full assistance with. It has been fun having that special time just the two of us, and I have enjoyed seeing all the wonderful things he can do. He is a very smart little boy, and I am very proud of all his hard work.
What is your child like today, compared to when they were diagnosed?
Luke was diagnosed about a month before his 3rd birthday. When he was diagnosed, he had a ton of energy, running around constantly. He would climb on anything within reach. We would walk away for a second and find him up on the TV stand watching the television close up. The TV had to be mounted high on the wall as he broke two of them when he was younger!! He no longer has as much energy. He can still walk by himself, but doesn’t run as often. He rarely climbs anything anymore either. Occasionally, I’ll find him sitting high on the back of the couch though. Which gives me mixed feelings of being proud that he was able to and scared that he’ll fall as his balance isn’t what it used to be. Speaking of which, he now needs help going up and down the stairs. He can still do it, but needs someone to hold his hand for balance. Especially in the morning when he first wakes up. His legs can be stiff, and it takes a little bit for him to get going on his own again.
Luke never really learned how to talk. He knew a few words when he was little, but has since lost them all. He will still babble when he’s in a good mood though. It’s adorable, like he’s talking in his own language. How I wish I knew what he was saying/thinking. Although we have gotten pretty good at reading his body language and can sometimes guess what he’s after.
What is one thing people would be surprised to know about living with Sanfilippo?
Having a child with Sanfilippo is hard. It is physically and emotionally exhausting. There are days you don’t know how you will get through. At the same time, you would give anything to keep those crazy days. Because for things to be easier, that would mean the worst thing has happened. That your child has lost their battle with Sanfilippo, that they are no longer here to hold. I would take a million exhausting days and sleepless nights, if that meant I never had to lose him. If I got to continue to see him smile, and continue to receive his amazing hugs. Sanfilippo may be hard, but these Sanfilippo kids are amazing.