Get to know the Koch family – Matt, Julie, Alex, and Jaxson!
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 Koch family’s honest and insightful perspective.
The Kochs lives in Tennessee. Alex is 18 and was diagnosed with Sanfilippo in December 2013.
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 the typical roller coaster ride that we have learned Sanfilippo can take you on at any given time.
The shutdown was tough on all of us, but especially Alex because he has always been such a social guy. We struggled to keep Alex active, engaged, socially happy. A plus was having dad, who typically travels with work weekly, at home way more due to travel restrictions in place. While the school year looked much different, Alex thrived in school and enjoyed being back in a routine and around his peers. Keeping him safe and healthy was always on our minds. He worked hard with PT at school on climbing stairs, which has become a tremendous struggle.
Seeing others in masks was a challenge for Alex because being non-verbal, he relies on others’ expressions as a way to communicate. The mask wearing hindered being able to see others smile back at him or understand what they might be saying to him when communication is already difficult enough without a mask.
The winter brought basketball season and Alex enjoyed watching his brother Jaxson play a full season of middle-school ball. The restricted crowds in gyms actually played in our favor, with less people, less noise, proved to be a bit easier on our sensory-sensitive, easily over-stimulated, boy.
We were able to take a fun family trip to the beach in the spring, after a year of no travel. Alex loves the walks on the beach. And we celebrated a BIG birthday; Alex turned 18! We know we are blessed to have him for 18 years.
We closed out Alex’s junior year of high school with a “promposal” from a sweet friend and a super-fun prom for special-needs students and peers from his school. He had a blast! We continue to deal with the struggles of how to keep his weight up (he is a slim 6’ tall & 110 lbs.), help him get a good night’s sleep (rare), and try understanding what he needs daily when he cannot tell us (he has lost all his words and only makes noise).
Often his need to communicate frustrates him and results in being very loud with whatever sounds he can get out. For example, in the Chick-Fil-A drive thru, it is extremely difficult to think and be heard to place an order with the face-to-face employee while Alex is loudly yelling from the back seat. I don’t know if he is telling me he wants a sandwich instead of nuggets OR he wants to flirt with that cute blond taking my order!
While the struggles of this disease can take you down at times, we try to always look for any silver lining. Alex is generally a very happy guy. He is complete joy! We are looking forward to engaging him in all the things his senior year of high school will bring!
What is your child like today, compared to when they were diagnosed?
Alex was diagnosed later than some, he was well into age 10 years. At 10, he could run pretty far without stopping for a break and mobility over all was steadier. He could climb stairs with very little assistance, as well as climb equipment on the playground. He could recognize family and friends and say some of their names easily and speak in broken sentences to communicate. He could sing parts of songs or fill in words to complete familiar phrases. While sleep has never been easy, it was a bit more consistent. Eating was still monitored, but choking was just starting to happen at times.
Today, Alex rarely runs and when he does it is just a few steps. He can still walk for long distances, but someone is always by his side and holding his hand. He gets tired faster.
He needs a lot of help on stairs and will not attempt stairs on his own. He does not say anyone’s name. He has no words, just sounds. He still eats by mouth, but is fed very slowly by an adult. Today he relies on caregivers for all his needs.
What is one thing people would be surprised to know about living with Sanfilippo?
The thought process for accommodations that have to be made to go anywhere or do anything when you have a child with this particular disease is probably something people do not realize.
From the daily outing to a vacation for a week, we have to make sure we think of Alex’s needs before we leave the house, and the planning can be extensive. This makes impromptu outings/trips often impossible; last minute has proven to be difficult on many levels. From simple things like making sure he has extra clothes in case of an accident, to the things we can’t control like favorable weather, all are always considered. When on the road, we think about where will we change him if he needs a diaper change. He is 18 and taking him in the women’s restroom stall causes some hard stares from others. Vacation locations have to be looked at closely as well. For example, is the destination handicap accessible, is there a walk-in shower available, is there a bedroom with a king size bed (tall boy) on main floor, just to name a few. Also, going with other families on a trip or Jaxson taking a friend is often difficult because we can’t just go with the flow. Unless you live it daily, you just don’t understand it. Going anywhere with Alex can be exhausting with all the “extra” you must consider and accommodate. We do it anyway and as often as we can because he is worth it! We strive to live as normal a life as we possibly can.