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I was completely devastated, to know that your child has a terminal disorder and that there’s no treatment … you don’t even want to get out of bed in the morning.
Found on FOX News 9 years ago
It is only because of us seeing Eliza’s story and the O’Neills’ dedication to raising awareness that we got Will enrolled in this first-ever enzyme trial, it is still experimental; we don’t know if it will work. We’re just happy that he has a chance.
Found on FOX News 9 years ago
We just really want to have our story out there because there could be another family out there struggling with a misdiagnosis, life is too short with Sanfilippo.
Found on FOX News 9 years ago
The struggle with Sanfilippo is there’s a lot of the cell waste from the disorder in the brain, and the problem with treating it in the past is they can’t get the enzymes past the blood brain barrier. We’re waiting to see if this trial has figured it out.
Found on FOX News 9 years ago
She has a normal urine test, so we’re cautiously optimistic.
Found on FOX News 9 years ago
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