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Family Friday Blog: The Howard Family

September 3, 2021

Get to know the Howard family – Chris, Amanda, Abby, Grace, and Blake!

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 Howard family’s honest and insightful perspective.

The Howard family lives in Iowa. Blake is 7 and was diagnosed with Sanfilippo in January 2021.

Solomon Pearson and his family, living with Sanfilippo Syndrome
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?

We have been taking things one day at a time and making memories as best as we can. We went to Yellowstone National Park this summer and have already booked a Disney Cruise for next year around Christmas. Blake loves Disney, especially Baby Yoda and Mickey Mouse. My husband and I have gotten closer than ever before because we know what the other one is going through.

We have had a hard time watching Blake struggle in school. It has been hard knowing what our little boy has. On one hand, I’m happy to have a diagnosis; on the other hand, it’s hard. It’s hard to watch him struggle in everyday life compared to his siblings; it’s hard sometimes to understand what we are faced with. We are a recently-diagnosed family, so we have just been working hard to accept it.

The bright spots have been the amazing support we have received. Blake’s school has bent over backwards to help him succeed. We have received amazing support from the MPS community and the Sanfilippo community. We have received support from our own community where we live. All this support has showed us, in this moment of heartache, there is love. We have felt loved and that is the bright spots.

Solomon Pearson, living with Sanfilippo Syndrome
Solomon Pearson and his family, living with Sanfilippo Syndrome
Solomon Pearson, living with Sanfilippo Syndrome
What is your child like today, compared to when they were diagnosed?

We are a newly-diagnosed family, but I would say he is about the same. He still has a hard time controlling his emotions, but we are working through them. He is starting to struggle with swallowing. Overall, he is about the same.

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

That these children love to give hugs. Blake loves to run up to you, grab your neck, and tell you he loves you. These children are the bravest kids I have ever seen. Don’t take your eyes off them because they can be really fast.

Hear more from the Howard family:

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