Mona
Mona is the single-mother of Owen, age 5, who has Juvenile Tay-Sachs.
A mom: I am finding my own way. I like to gather information from other parents for hypotheticals and mull it over. I'm not one of these people that wants to make decisions in advance.
A mom on how the experiences of other parents influences her decisions: I am finding my own way. I like to gather information from other parents for hypotheticals and mull it over. I’m not one of these people that wants to make decisions in advance. I take it day by day.
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A mom: I am finding my own way. I like to gather information from other parents for hypotheticals and mull it over. I'm not one of these people that wants to make decisions in advance.
Bringing my sister up to speed.
A mom on decision-making: You do have to anticipate what may lie ahead and then trust yourself. Don’t give your power away.
All of my decisions are about getting him to the clinical trial.
A single parent, at home, with no help, in the time of COVID
He got a raw deal. This isn’t what either of us signed up for.
Being a single mom: It’s just the two of us.
The quest for a cure: Sometimes, I don’t know what to hope for.
My family just doesn’t get it.