How One Mother Turned Grief Into Purpose

When Nasha Fitter talks about motherhood, she does not sugarcoat it. She speaks honestly about exhaustion, resentment, ambition, grief, marriage, and survival. But she also speaks with remarkable clarity about joy, resilience, friendship, and purpose.

Nasha is a Harvard MBA, entrepreneur, rare disease advocate, and mother of three. Her youngest daughter, Amara, was born with a devastating genetic condition called FOXG1 syndrome, a rare neurodevelopmental disorder that affects mobility, communication, muscle tone, and seizures. What began as a terrifying diagnosis eventually became the catalyst for building two organizations that now support thousands of families navigating rare disease care.
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In our conversation for Trust Me Mom, Nasha shared what it was really like to go from ambitious startup founder to full-time caregiver almost overnight, how she saved her marriage during unimaginable stress, and why exhausted mothers need to stop glorifying self-sacrifice.

“I always wanted to do something really great with my life”

Nasha grew up in an immigrant family after moving to the United States from India as a child. Education and ambition were deeply woven into her upbringing. “I was ambitious just naturally from a young age,” she said. “I always wanted to do something really great with my life.”

That drive showed up early. At just 13 years old, she convinced an accountant to let her work for free simply so she could learn. She built an exciting global career, eventually launching an education technology company called Schoolie while raising two young children. Like many ambitious women, she found herself balancing growing professional success with the invisible labor of motherhood. “It was especially hard for me and women like me who are very ambitious to then deal with motherhood and what does that mean and your love for your child, but your love for your career,” she said.

Although she grew up in a household where both parents shared responsibilities fairly equally, marriage introduced a different reality. “My husband’s career always ended up taking precedence,” she admitted. “You resent being at home doing the housework because no one’s doing it and you resent then also working and also having to do everything.”

The diagnosis that changed everything

When Nasha became unexpectedly pregnant with her third child, life was already stretched thin. She was fundraising for her company’s Series A round while caring for three children under four years old.

Then Amara began having seizures.

Within months, genetic testing confirmed FOXG1 syndrome. Doctors told Nasha her daughter might never walk or talk and could remain cognitively at the level of a one-year-old for life. “They told me there were no therapies. There were no cures,” she recalled. “No one is going to focus on this condition because there’s only a few hundred patients we even know of in America.”

The experience shattered the life she thought she was building. “It was honestly very difficult because all of a sudden I had three children under the age of four,” she said. “And then everything changed dramatically.”

Those early months became pure survival. “I was just trying to keep my daughter alive, honestly,” Nasha said.
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At the time, she had little family support nearby. Her husband’s demanding new job required constant travel, and she was running on almost no sleep while caring for a medically fragile child. “She was on a medication where she would wake up every two hours at night,” Nasha shared. “I just was not sleeping at all and still managing my other two young children.”

Learning to let grief move through her

One of the most powerful moments in our conversation came when Nasha described finally allowing herself to fully feel grief after months of suppressing it.  “I sat in a dark closet for about five hours,” she said. “And I just said, 'Okay, I am going to just let all of the grief [in]. I'm going to feel it.”

Instead of continuing to push away fear and sadness, she allowed herself to fully experience them. “The thing with grief is so fascinating,” she explained. “If you let it come in you, it will go through you. It will not stay, but you have to allow it to come in you, and you have to let it process. And then it will leave.”

That moment became a turning point. “I told myself, I am not going to be a victim of my circumstance from this moment onward,” she said.

I hope her words resonate with and inspire other mothers who try to numb their pain, push through exhaustion, or pretend everything is fine while silently drowning.

Why mothers need more help and less guilt

Throughout the interview, Nasha repeatedly emphasized something many women struggle to hear: mothers are not supposed to do everything alone. “The society we live in now has focused on independence to a fault,” she said. “Women with this whole DIY mentality, do it yourself. And there is a badge of honor in being exhausted.”

She believes that mentality is harming women physically, emotionally, and mentally. “A child needs a stable, happy parent more than anything,” she said. “We don’t need to do everything for our children to be good parents.”
Nasha openly admits she wishes she had hired help much sooner. “Even if you have to put your whole salary to just having help in those early years, it’s worth it,” she said.
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Today, she relies on caregivers and support systems that allow her to continue running two organizations while still being present for her family. One of the caregivers she hired during those early crisis years has now been with her family for nearly a decade. “If I didn’t have that help, I couldn’t run two organizations,” she said. “That is the brutal fact.”

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When Nasha Fitter’s third daughter was diagnosed with a devastating rare genetic condition, her entire world changed overnight. In this inspiring episode of Trust Me Mom (Season 2, episode 42 available on Spotify and Apple Podcasts), Nasha shared how she went from ambitious entrepreneur and Harvard MBA to full-time caregiver, advocate, and founder of organizations helping thousands of families navigate rare diseases.

We talked about motherhood and ambition, burnout and unpaid labor, marriage under pressure, grief and resilience,  raising a child with severe disabilities, building support systems and why moms need help, rest, and community. Nasha also shared practical advice for exhausted moms, parents navigating diagnoses, and couples trying to survive difficult seasons together.

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Building something that did not exist

Rather than accepting the lack of resources available for rare disease families, Nasha decided to create them herself.
She co-founded the FOXG1 Research Foundation, which is now advancing a gene therapy into clinical trials. She also launched Citizen Health, a technology platform that helps rare disease families manage daily care, access resources, and connect with advocacy communities. “We are building the tools to help families manage day-to-day care,” she explained.

Citizen Health now supports over 8,000 patients and more than 100 advocacy groups. “I had to create these opportunities because they didn’t exist,” she said.

For Nasha, pain became fuel for purpose. “Whenever you’re going through something, look at it as an opportunity to then create something that can help yourself and help others.”

The marriage survival strategy no one talks about

Families raising children with special needs often face extraordinary pressure, and divorce rates within these communities can be high. Nasha and her husband managed not only to survive but to strengthen their relationship. “The lucky thing for me is my husband and I are very in love with each other,” she said.

She credits honest communication and flexibility as essential tools. “What my husband and I have done is we accelerate and decelerate at different times,” she explained. Sometimes his career took priority while she worked part time. Later, they reversed roles so she could accelerate professionally. “It is very hard to have three children, one with special needs, and two parents with big jobs,” she said.

Nasha also emphasized the importance of recognizing each partner’s strengths rather than demanding perfect equality in every task. “You can outsource the cleaning. You can outsource the cooking even,” she said. “But you can’t outsource being there.”

Friendship as survival

One thing Nasha spoke about repeatedly was the importance of female friendships. “My friends are everything to me,” she said.

Whether it is weekend getaways, reading alone for two uninterrupted hours on Saturdays, or simply getting her hair washed every few weeks, Nasha now treats her own wellbeing as non-negotiable. “You have to set your boundaries,” she said. “You have to kind of treat yourself at that same level.”

She believes women often prioritize everyone else’s needs while abandoning their own. “I stopped reading for a really long time because I didn’t have time,” she shared. “And I realized what an impact that it had upon me.”

For mothers who feel isolated, overwhelmed, or guilty for needing rest, her message is simple: taking care of yourself is not selfish. It is necessary.

Hope for the future

Today, Amara walks, communicates through an iPad, and continues to exceed expectations. “No FOXG1 children walk,” one physician once told Nasha. But Amara did. Nasha remains hopeful that ongoing clinical trials may bring even more breakthroughs for children like her daughter. More importantly, she hopes mothers stop seeing themselves as failures for needing support.
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“You human beings have the capacity to get through anything,” she said. “We absolutely can get through anything.”
And perhaps that is what makes Nasha’s story so powerful. It is not just about surviving unimaginable hardship. It is about refusing to disappear inside it.