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Family Friday Blog: The Karlson Family

May 7, 2021

Get to know the Karlson family – Matt, Deanna, Joseph, Addison, and Seth!

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 Karlson family’s honest and insightful perspective.

The Karlson family lives in California. Seth is 9 and was diagnosed with Sanfilippo in August 2013.

Sadie Haywood - 2020 - c
Sadie Haywood - 2020 - b
Sadie Haywood - 2020 - a
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?

In 2020, the pandemic of course landed us all working and going to school virtually from home. Matt’s refinery decided to idle indefinitely, but he was able to maintain employment, although many co-workers around him were furloughed. Seth was able to get a “caregiver for respite care” in the home to help us be able to continue working.

We were able to explore the beauty of California by taking many hikes and adventures. Mom, Dad, Brother, and Sister took scuba diving lessons to work on getting scuba certified. Our family had the opportunity to visit with other MPS/Sanfilippo families that live nearby once it was safe to do so.

Seth was able to go back to in person school in October until it shut back down after the end of the year. He then developed a bone cyst requiring major surgery with a plate and screws placed in his left hip. He is slowing still recovering, but making progress.

Mom came down with COVID during Seth’s surgery and was able to recover without sharing it with anyone else in the home.

Seth gained a new second cousin who was born at the end of December.

Our family was able to take a vacation for Spring Break along with Seth’s Grandparents, Aunt, Uncle, and Cousin to Hawaii.

Seth and his brother and sister were able to go back to school in person in March, and now Seth is being considered for a clinical trial in Southern California.

It has been a rollercoaster of a year, and we feel very blessed to still have work and good health for our family. It has been tough hearing the news of many MPS community members passing over this last year. We continue to power through and try to see the positive in the life we are able to live and enjoy the relationships we are able to share in.

What is your child like today, compared to when they were diagnosed?

Seth was diagnosed at age 2, so he has progressed pretty far in the disease as compared to what he was like at diagnosis. When he was diagnosed, it wasn’t obvious just by looking at him that anything was wrong other than the fact that he couldn’t talk.

These days, when we meet strangers, I can immediately see a look of sympathy in their eyes because it’s obvious that he has special needs. This has its pros and cons. The pros being: I don’t have to defend his behavior; the fact that he reaches out and touches everyone (he loves to hold hands); or the noises that he makes. The con is the reality that he has changed so much that it’s obvious that something is “wrong” with him.

Seth is still the same easy-going, happy, loving kid with a smile that would light up any room that he has always been and for that we are so grateful and blessed!

What is one thing people would be surprised to know about living with Sanfilippo?

I don’t know if people would be surprised by this or not, but living with Sanfilippo Syndrome has given our family the ability learn how to love harder than we ever knew was possible.

It has connected us to people who we may have never met otherwise, and that bond that we share with other families is so powerful that I can’t even put it into words. We just immediately get each other and can bond just being near one another without ever speaking a word. Although that rarely happens because every encounter with another Sanfilippo or MPS family is like seeing a close family member or best friend that you haven’t seen in years.

Follow the Karlsons to keep up with their journey

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