This little miracle wasn’t a cure, but it was working to slow – or even in cases with the early diagnosis – seemingly stop the majority of the disease progression. But it wasn’t an easy road. It had to be given intrathecally, as an injection into the spinal fluid, for it to travel into the brain and fight back against the neurological destruction. International Harvester and Farmer Fun Tractor shirt, she would have to be sedated under anesthesia to safely receive it. Every two weeks. Indefinitely. We felt so lucky, and also completely terrified. There was a clinical trial for this drug, but you had to be four years old, and Marian was only one. This meant our only hope was accessing the drug through compassionate use. At the time, no patient in the world as young as Marian had been treated.
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