"I woke up and had a panic attack that morning because the next 365 days can be crucial because of what he has got,"
"I know it isn't a cure but it will give him a significantly better quality of life."
"I know it's going to be in the hundreds of thousands if we go out there for one injection and then monitoring for a year,"
"living in the moment"
Tammy McDaid, from Swansea, fears the next year could be crucial for her five-year-old son Tate, who has Sanfilippo Syndrome, a rare childhood dementia affecting just over 100 UK children. A drug awaiting possible US Food and Drug Administration approval could delay symptom onset and allow Tate to remain active longer. The family hopes Tate could start treatment in the summer if approval is granted. Tammy has raised 35,000 to help cover clinical trial costs but estimates full access, including a year of US monitoring after a single injection, could cost hundreds of thousands. Tammy is focusing on living in the moment and making memories, including a joint birthday holiday to the Canary Islands.
Read at www.bbc.com
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