Through the Eyes of Sanfilippo-a grandmother’s perspective

Joan, Justin’s mom, is one of my heroes. She embodies Christ-likeness in so many ways that I admire, and although she has wise words to pass on, what moves me so much is her patience, abundant availability of grace, and her amazing strength. Thank you, Joan, for modeling what it looks like to be a humble servant of Christ in the way you live your life.

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Oct 18: Lunch with Kelly in the city

One of the best things about Sanfilippo are the friendships you make with other Sanfilippo parents. We are blessed beyond measure to have the Huberts in our lives. I treasure every moment I get with Kelly so it was a no brainer for Brooklyn and I to go meet her and Liv in the city at Children’s between Liv’s appointments for lunch. Although it was a short visit, it was so good to see them!

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our visit to Children’s

Today we made our trip to Children’s. There really was no new news with the exception of learning a second urine test done on Jayden showed higher levels of an enzyme consistant with MPS III, Sanflippo Syndrome. However, when we met the genetic doctor that specializes in MPS, she was still suspicious of Hunter’s after seeing Jayden and ordered a retest for Hunters Syndrome.
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