Changes

We got word from our doctors that Oliver's genetic test confirmed that he has Sanfilippo. We were not holding out hope for a miracle, but it is still sad to be given the news....again. We are going to meet with a geneticist when we are back in the US to go over all of the results and see what further tests may need to be run.
Wavey continues to be a bit calmer this week. Both her OT and speech therapists commented today on Waverly's inability to do tasks she used to be able to do. They can see the negative effect that the disease is having on her little brain. Unfortunately, we can too. It is a terrible thing to watch your child struggle with something that once came so naturally.
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bome62 said…
Shannon, i wished there was a cure for this awful disease. Praying for your family daily.
Bonnie in Missouri
July 17, 2008 at 3:59 PM
g said…
Hi, My name's Daria (Arnold) Chacon; my husband and I went to Taylor and graduated in '97 and '96 respectively. I can't say as I recall meeting you there, but I'm sure we must have run into each other. At any rate, after a career in something else I went into medicine and am now a Pediatrics resident at CHoP. (Ironically, I'm actually on the inpatient Metabolism service at the moment). I rarely glance at the Taylor mass emails, but "SanFilippo syndrome" in the prayer requests caught my eye and I skimmed a bit of your blog. I don't know that I can offer any meaningful words of consolation, and I cannot imagine what you as a family are going through. But I will tell you that I am working with some kids and their families right now who, despite incredibly grim prognoses, amaze and inspire us daily with their resilience and love. I have a feeling that you are one of these families as well. I cannot but wish you the peace that passes understanding, hard though it may come. If you are in Philly feel free to drop me an email if you need any local pointers or if you would like to stay in our (small but welcoming) house 20 min. from CHOP. Daria Chacon, MD dachacon@bigfoot.com
July 17, 2008 at 7:31 PM
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