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.](https://i.ytimg.com/vi/tVT6mE6mESI/sddefault.jpg)
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.
1 / 10
![](https://i.ytimg.com/vi/tVT6mE6mESI/hqdefault.jpg)
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.
![](https://i.ytimg.com/vi/BhGsTnTsBv4/hqdefault.jpg)
Bringing my sister up to speed.
![](https://i.ytimg.com/vi/Bj7odwDczuY/hqdefault.jpg)
A mom on decision-making: You do have to anticipate what may lie ahead and then trust yourself. Don’t give your power away.
![](https://i.ytimg.com/vi/0tIq3_r13wU/hqdefault.jpg)
All of my decisions are about getting him to the clinical trial.
![](https://i.ytimg.com/vi/8amdiWUMvcY/hqdefault.jpg)
A single parent, at home, with no help, in the time of COVID
![](https://i.ytimg.com/vi/Oo7sydpP_0k/hqdefault.jpg)
He got a raw deal. This isn’t what either of us signed up for.
![](https://i.ytimg.com/vi/r-kdsKXiw1E/hqdefault.jpg)
Being a single mom: It’s just the two of us.
![](https://i.ytimg.com/vi/ZmS9gVYKDks/hqdefault.jpg)
The quest for a cure: Sometimes, I don’t know what to hope for.
![](https://i.ytimg.com/vi/UOo_VyJIIVA/hqdefault.jpg)
My family just doesn’t get it.
![](https://i.ytimg.com/vi/wK2c4bUxEJQ/hqdefault.jpg)